Saturday, October 1, 2011

10.1.11 - Phish concert for Irene recovery & stem cell treatment..can it work?

On September 14th, Jamie and I went to the Phish concert, A Benefit for Vermont Flood Recovery. I'm not a huge Phish fan - meaning that I like their music but I'm not obsessed. The light show was AMAZING. Here are some pictures from the show...


visitors from above



I love how this one looks like UFOs landing

mesmerizing


a flash of light



the blast of light and the raised fist really makes this one for me








lighting effects



I've been told that the lighting technician has been working with Phish for 25 years so he knows the exact timing for the lights to go with the music.  It shows!
a hazy shade of blue


a moment of zen




        everything seemed still for a moment
abstract lights


cool lights



I know, Hello Captain Obvious
bless vt and america


fireworks



even though I wasn't purposely taking part in the activities (contact buzz) that make these blasts of light so spectacular, I was still blown away.

flying away






Somehow, I took this picture at just the right time as the light beams aligned to make the shape of an airplane.  Although there were many shapes that were projected around the stage, a plane wasn't one of them.
hazy


keeping the peace


These were the cops assigned to the outdoor beer garden - rough job, huh?  They were very nice and showing the feelng of community at the show.
magic


Phish


twinkly stars


sunlight



twilight

We were parked next to some great people that are actually from the Warren/Waitsfield area and were affected by Irene. While talking with one of the women, I found out that she also has MS. I'm not quite sure how I managed to find out this information but I also learned that she was one of a select few people to be chosen to have an experimental stem cell implant. Not enough time has passed to know if the treatment has worked, but I feel hopeful for her. I still don't know much about this treatment so I'm sharing an article from The Guardian so we can learn together.
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Stem cells: great expectations
Stem cells have been touted as a potential cure for almost everything – but the reality is still a long way off

September 22, 1:14 PM by Sarah Boseley

A colony of human embryonic stem cells (light blue) growing on fibroblasts (dark blue). Photograph: Reuters

In a sceptical era, when few people still believe that miracle cures can be poured out of medicine bottles, stem cells still fire the imagination and create hope. Maybe that's because it is not just the patients who want to believe that stem cells may one day enable them to walk again, but also the doctors and the scientists.

There is genuine scientific excitement over the concept of using the body's own cellular building blocks to regenerate damaged or ageing organs. "Regenerative medicine" is the scientists' preferred terminology. And although it is still very early days, the lab work and limited experiments so far carried out in animals – and humans – have not disappointed.

The great hope, which the paralysed former Superman star Christopher Reeve shared and to which he dedicated a fortune, is that stem cells may one day repair a damaged spinal cord and allow paralysed patients to walk again.

It may happen. The Geron Corporation in the US has begun experiments on humans. It has now injected two patients with its stem cell product, catchily codenamed GRNOPC1. So far the company has revealed only that neither patient, injected between seven and 14 days after their catastrophic injury and given just two months of therapy, had any serious side-effects from the treatment. There are all sorts of imponderables, from the size of the dose to the timing and location of the injection to the critical issue of whether the stem cells will survive inside the body, which mean it will be years before we have any clear idea as to whether this is going to work.

But some stem cell treatments have been spectacularly successful, such as the rebuilding of Claudia Castillo's windpipe . Tuberculosis had wreaked such damage that the 30-year-old mother of two was barely able to climb the stairs before an enthusiastic, pioneering international group of doctors chose her to be the lucky subject of a stem cell experiment.

The operation took place in Barcelona, but with input from some of the world's top scientists in London and Italy as well as Spain. They took stem cells from bone marrow in her hip and tricked them into becoming cartilage. Then they seeded them on to a piece of donated windpipe, which was transformed into something her body recognised as one of its own organs. Now she goes dancing.

Castillo's treatment involved adult stem cells. Bone marrow cells are particularly responsive to persuasion to become something else, but the clock can also be wound back on skin cells and other adult cells in the laboratory. Embryonic cells, which have not yet developed into anything, are best of all – removed from the blastocyst, which is the embryo at only a few days gestation when it is the size of a full stop. The disadvantage is the religious and moral dismay such work can excite.

The basic stem cell concept is so simple that it is hardly surprising that they have been touted as a potential cure for so many diseases. There is great hope for Parkinson's disease, but huge caution on the part of reputable scientists – not least since the disastrous outcome of an early experiment in 40 patients in Denver, reported in the prestigious New England Journal of Medicine in 2001 . Embryonic nerve cells were injected into the brain, in the hope that they would supply the missing dopamine. Some of the younger patients improved, but 15% of the group had a stunning and distressing response about a year in. They began to writhe, jerk their heads and flail their arms uncontrollably as the foetal cells went into overdrive. One scientists said they were "absolutely devastated".Patients who are in a desperate state easily fall prey to quacks and charlatans who offer injections of "stem cells" that may be nothing of the sort – or if they are, have probably not been differentiated to turn into the type of cell that is needed. Such were the doctors who injected stem cells into patients with multiple sclerosis – at one point offering treatment on the Cork to Swansea ferry, the Guardian discovered , when they were forbidden by the authorities from holding a clinic on the Irish mainland.

But the excitement over the potential of stem cells has not been dampened by such abuse, because those who really know – the scientists in the field – really believe in the cures to come. Sadly for those who need help now, it is going to take a long time, but happily for humankind, the future looks unusually hopeful.

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The show was terrific.  Although I don't want to hear of more people being diagnosed with MS, it was amazing to meet our tailgate neighbor, AR, my fellow MSer.

Last thing,

HAPPY BIRTHDAY, SARAH, my seester!!!!!

Friday, September 30, 2011

9.30.11 - holographic bracelets

My friend has one of these bracelets and he swears by it.  He told me that he used to have intense migraines that would last a couple of days every few months.  After wearing the bracelet, he hasn't had migraines.  Yes, these are the bracelets that you see on TV that show people who have no balance and then they put on the bracelet and suddenly their balance is improved.

Seriously, I thought it was a crock of s** and it may be, but remarkably I had the same reaction.  As I mentioned in my last post, I tend to be skeptical with alternative treatments.  I'm going to give it some time...trying to be open minded.



The Nancy Davis Foundation for Multiple Sclerosis

Thursday, September 29, 2011

I downloaded an app on my iPad called Flipboard. With it, I can bookmark favorite feeds so recently I've bookmarked a few regarding Multiple Sclerosis. Below is a feed that I found today talking about the work of Dr. Zamboni.

I haven't decided what my opinion is about this theory.  I tend to be skeptical of homeopathic or alternative therapies.  I'm not sure if this is a positive or negative thing, but I'm interested in reading about different theories.

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http://www.patient-experience.com/index.php/multiple-sclerosis-and-ccsvi/

Multiple sclerosis, CCSVI and Balloon angioplasty

With the eagerly anticipated research studies on the role of CCSVI in Multiple Sclerosis, and clinical trials evaluating balloon angioplasty as a treatment for CCSVI and Multiple Sclerosis underway, there finally seems to be a positive step in the direction of this controversial therapy. One which many Multiple Sclerosis (MS) patients and caregivers have anxiously been waiting for a medical verdict on. Indeed the technique has started to be called “Liberation Therapy” by many in the Multiple Sclerosis community.

Multiple Sclerosis, widely thought to be an autoimmune disease, although it hasn’t been proven as such, is a chronic disabling neurological disease that attacks the Central Nervous System which is made up of brain, spinal cord and optic nerves.

In 2008 Dr Paolo Zamboni, a vascular specialist put forward his theory that Chronic Cerebrospinal Venous Insufficiency, also known as CCSVI is the causing factor of Multiple Sclerosis. Chronic Cerebrospinal Venous Insufficiency (CCSVI) is a condition with a compromised flow of blood in veins draining the central nervous system. Dr Zamboni also suggested an endovascular treatment called balloon angioplasty to remove these blockages. Dr Zamboni’s theory and suggested treatment immediately generated tremendous amounts of hope and interest amongst MS sufferers and carers. However, much of the medical community around the world have so far only been hesitant and sceptical, snubbing Dr Zamboni’s theory and the treatment, labelling them as medical myths. The procedure has been banned in other countries and the medical advisors are waiting for rigorous clinical trials to produce sufficient evidence to support it. However, despite the claimed risks and medical concerns surrounding this line of treatment, this procedure is already being performed privately in 40 countries, and is allowed by Kuwait’s medical authorities and paid for by their State financed health system.

It may be interesting to take a moment here to note, that many critics of Dr Zamboni’s CCSVI theory and treatment are involved in research studies relating to such drug related therapies for MS. What is also strange is that most research studies for Multiple Sclerosis seem to be concentrated towards slowing down and controlling the MS, making the disease more bearable, more manageable and the symptoms milder instead of preventing or curing it altogether. The very powerful pharmaceutical industry does business of over $8 billion per year, selling MS drugs that control the disease but not cure it. People are beginning to ask if this MS “industry”, worth over $10 billion a year might be interested in maintaining the status quo?

What are your views on the subject? Feel free to share your story and add links to useful sites as well as upload any relevant videos.

Read our other article on this subject or visit our website on Multiple Sclerosis Information

NSWatts78@gmail.com
I've had the CCSVI angioplasty procecedure twice with wonderful results. After living with MS for over 23 years, mostly going downhill, especially in the last 36 months, this treatment was a breath of fresh air for me and changed my life.     

I've tried most of the "DMD drugs" --I even had to take Avonex and Copaxone as a double therapy because I was progressing so quickly. But even that wasn't helping much. I think that was God telling me He had something better in mind, something called CCSVI.     

I pursued it with a vengence, learned everything I could and went for it. Boy, am I glad I did.    

Nothing has helped me the way this simple angioplasty treatment has helped me. My debilitating fatigue which ruled my life in 2-3 hr segments in-between naps for the past 10 years has vanished. My chronic head pain (pins and needles all over) is pretty much gone. My walking is better, balance better, cognitive function better, slurred speech gone, improved bladder function.    

I stilll have numbness in other parts of my body, but that is from MS damage that was done from the disease progressing over the years. I would have never dreamed in a thousand years that I could have a "life" again after so many years of spiraling downhill, while my neurologist just tried drug after drug to no avail. He told me not to pursue the treatment because it was to dangerous. I defied him and now, even he cannot believe my improvements.    

Since my angioplasties, my MRI's remain clean with no new plaques. The more I read about the vascular component of MS, the more I am convinced that MS is not an "autoimmune disease" that falls into the same catch all category like so many other illnesses, but rather, is a vascular disease that can be controlled by improved blood flow, endothelial health, and exercise.     

I continue to take my Copaxone, although I'm not sure why. Is it helping? Or am I just scared to stop it because of years of conditioning by my various neurologists in different states. I live now with emboldend purpose and control over my health like never before. Gone are the days of "doctor knows best." Not for me. I am my own best advocate now and it will remain that way until I leave this earth.    

I've felt better these past 13 months since I had the CCSVI treatment than I have in at least 3-5 years. My improvements have been dramatic and have given me back a quality of life that I only dreamed about in the past. CCSVI truly is a miracle from God.    

I am so grateful to Dr. Zamboni and his colleagues for thinking outside the box and giving us this new hope for improvement in our MS. Something we thought was never possible as we progressed down the slippery slope of a chronic progressive disease like Multiple Sclerosis.     

My mission in life now is to spread the word about CCSVI. I am on the patient advisory board of the non-profit organization CCSVI Alliance, formed by MS patients in Feb. 2010 to help others learn about CCSVI and help them take their health care back into their own hands. I pray that I will be able to help others learn about this simple treatment that could possibly improve their lives too.  Contact www.ccsvi.org for more information on CCSVI.    

The internet and social media is changing the world. Read and educate yourself about this amazing treatment for MS through the massive amounts of information now available to you. I don't think you'll be disappointed.    
Blessings,    
Nicki    
nicki.beaglewatts@ccsviorg
Yesterday, 8:51:27 PM EDT – Like – Reply

Jenny Ferguson
I had a balloon angioplasty  at Ameds Poland, in August 2011. Having had PPMS for the pass 20 years I felt I had nothing to loose and possibly something to gain.  

Im pleased to say I have been delighted. My mobility is still very shaky but I have stopped choking, headaches have ceased, slurring words less and generally more motivated.   The dreadfull brain fog is begining to leave me and plan to go back in Feb for a check up and possibly a repeat angioplasty.  

Follow my CCSVI journey and overall MS digest at bettebravoblog.blogspot.com

We all need to share , spread the word.   
Jenny
Yesterday, 7:30:25 AM EDT – Like – Reply

Tom Mayfield
I'm keeping an eye on it
Yesterday, 7:30:07 AM EDT – Like – Reply

Eileen Curras
It is great that the topic is discussed, but I believe that the goverment shoul have control.  I wish they will stop calling controversial therapy. Neurologist want to have an exclusive control of Multiple Sclerosis and other health conditions should be evaluated.  Here in the United States should learn from the experiences of other countries.
Yesterday, 7:15:42 AM EDT – Like – Reply

CCSVI Angeles Health
RT @MS_getinformed: Discussion blog on multiple sclerosis and CCSVI is still up. It would be great if you contributed!
Yesterday, 6:28:50 AM EDT – Like – Reply via Twitter

Multiple Sclerosis
Just to let you know our discussion blog on multiple sclerosis and CCSVI is still up. It would be great if you...
Yesterday, 5:29:07 AM EDT – Like – Reply via Twitter

CCSVI Locator
RT @MS_getinformed: Multiple sclerosis and CCSVI - come over and have your say!
August 5, 2011, 2:32:39 PM EDT – Like – Reply via Twitter

Liz Hall Multiple sclerosis, CCSVI and Balloon angioplasty « The Patient Experience August 5, 2011, 5:19:26 AM EDT – Like – Reply via Twitter

Cyndi Tunstead well I went to Sophia, have had some significant improvemnets, didn't expect a miracle cure.
July 7, 2011, 3:02:37 PM EDT – Like – Reply

Kendra Scarrow http://www.facebook.com/notes/ccsvi-ivcc/doctors-with-ms-who-have-been-treated-for-ccsvi-les-m%C3%A9decins-avec-la-sp-qui-ont-/160260514038006
May 16, 2011, 7:40:31 AM EDT – Like – Reply

Karen
http://www.walesonline.co.uk/news/wales-news/2011/03/29/ms-sufferer-s-family-forced-to-pay-for-operation-in-egypt-91466-28419350/    

another success story in the press !
March 29, 2011, 6:44:26 AM EDT – Like – Reply

Paul Booker
Hi again all. I thought that some of you may be interested in reading a local newspaper story about my forthcoming trip to Bulgaria.      

http://www.west-somerset-today.co.uk/News.cfm?id=7444&headline=Paul%20heads%20to%20Bulgaria%20for%20liberation%20treatment    
Yours in wellness    

Paul
February 25, 2011, 8:23:12 AM EST – Like – Reply

Dee
Thank you So Much, Irishbear, for getting the word out about CCSVI--! I am waiting for my 2nd procedure next month in Calif., as my azygos vein was not addressed the 1st time. February 24, 2011, 10:53:53 AM EST – Like – Reply

jackie-joy@att.net
Dee  - I take it you're  going to Pacific Radiology?  Is he checking your hemiazygos also?  What do you mean that your azygos wasn't treated the first time?  It wasn't ballooned?  It wasn't stenosed?  How is your walking?  Is there an airport near that facility?  

Dee
Hi Jackie, sorry it took me awhile to find this place again.  The John Wayne Airport is just up the highway from the Pacific Interven. clinic & Rennaissance Surgical Center.  I pushed for the clinic staff to bill Medicare, so I had to have my procedure done thru the Fountain Valley Hosp. a few miles away.  I had my 2nd procedure in March 2011 and Dr. Arata wants me to come back.  He opened my azygos and right IJV but not the left.  My left side may not have an IJV, nly collateral veins,  So Dr. Arata wants to go in thru my shoulder and IF I have an Intewrnal Jugular, he will clear it from the top down--WITH the flow of blood.  This is scheduled for May13th.  P.S. Dr. Arata says he "tears" the blockages open so they will not re-stenose. 
April 29, 2011, 12:18:07 AM EDT – Like – Reply

Jerry Burston
I saw the Montreal conference in April and had a real hope for the first time since I was diagnosed in 2000.   I saw my neurologist and he claimed he had had never heard of it, ( this is in 2010!) and dismissed my copy of Dr Simka's protocol as 'not a proper medical paper'. I persevered and saw my GP and he got me an appointment with a local specialist who laughed at the idea that I had been able to get anything worthwhile from the Internet, and he promptly did less than half of the protocol and pronounced that my veins were perfectly clear. This was devastating, the only thing I consoled myself with was that the had not done the job properly, and so his result was also faulty. After many weeks nursing a bruised ego, I went back to my GP and recited the story. He said, the only thing that will satisfy you is if we get you an appointment with Dr. Franceschi. He duly did and three weeks later I went to Paris (I live in Brittany) and had the examination from Dr.Franceschi, who says that both my vertebral veins are blocked! Result at last! Unfortunately, the operation is on hold in the French medical service and although Dr.Franceschi has put me on his list for surgery as soon as the ban is lifted, I could have to wait for two or three years, or convince someone to give me the money to fund the procedure.  

The doctor is confident that the ban will be lifted and is sure the benefits to MS sufferers will soon be clear.   The only people who do not appear optimistic are those who will loose part of their patient base like my neurologist, the drug companies and the MS Society itself, which will have no reason to exist if there is an effective treatment.  

But its my body which is suffering and my friends and family who are having to endure this disease.   How dare anybody delay a treatment for this illness just so they can continue to amass fortunes from this situation?  
February 24, 2011, 10:04:35 AM EST – Like – Reply

mwilliams
not sure ccsvi is a good thing as a former nurse not sure fiddling with veins and arteries in neck is something i want to fiddle with,having been a nurse in i.c.u. and vascular surgeons office. this is a temporary solution i think..
February 23, 2011, 12:57:39 PM EST – Like – Reply

Karen
Have been informed by the BBC today that the programme planned on MS for 28th at 7.30. has been postponed to Monday 7th March at 7.30. BBC 1 Southwest or Sky channel 987 or the BBC i-player.   There is another programme on on MS on BBC Alba on the 28th Feb at 9.30pm, Sky channel 168 or again, the i-player.   CCSVI is discussed in both programmes along with all the naysayers!
February 23, 2011, 10:54:57 AM EST – Like – Reply

Brian
Hi Karen    

Is this the correct programme?    
http://www.youtube.com/watch?v=6BxbQd4FrZ8
March 9, 2011, 9:30:02 AM EST – Like – Reply

Paul Booker
Hi All,  
I had a very interesting email today from BG Medical Tourism, Bulgaria, who I am organising my treatment with. This may well be of great interest to some of you.    
Everyone in the UK who books for their CCSVI diagnostic and treatment package with them till 31.03.2011 will make benefit of a 1000 euro discount (that's £840), making the treatment 5000 euros instead of the usual 6000. If you are lucky enough to get the treatment in Scotland it would cost at least 9000 euros (not including accommodation).    

As well as the treatment etc, the price includes (amongst other things) a 5 star hotel and an English speaking companion throughout your stay.    

The date of the CCSVI package can be later in spring or summer, but booking  and downpayment should be made before 31.03.2011.If you are interested, you can check details via the website at:
http://www.ccsvibg.com, or contact Irina, the Western Europe Sales Manager via email: 
i.ilieva@bgmedicaltourism.com      

Good Luck all.  
Yours in wellness.  
Paul
February 23, 2011, 8:36:06 AM EST – Like – Reply

Karen
Hi Paul, thanks for the info but would just like to add what is just my personal opinion... decisions should not just be based on cost - people MUST research whichever doctor is doing the procedure and RESEARCH RESEARCH and try and speak (really speak) to others who have been treated by that doctor..... either way its a lot of money and its imperative to make that money do the best job it possibly can!
February 23, 2011, 10:59:01 AM EST – Like – Reply

Elma Scott
Has anyone heard much about the stem cell therapy, which has been in the news about how it "reverses" Multiple Sclerosis? The trials have shown encouraging results.   In the trials, they remove stem cells from the patients' bone marrow, and then used chemicals to destroy all existing immune cells in the body, before re-injecting the stem cells. These then developed into naïve immune cells that do not see myelin as alien, and hence do not attack it.  

Here is the UK MS society's link about it -   http://www.mssociety.org.uk/support_and_services/audio_and_video/video/awareness_talks/2010_talks/stem_cells_feb10.html
  
Further information on this link -   http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1330

What do you think?
February 23, 2011, 5:57:12 AM EST – Like – Reply

Paul Booker
Hi,    
I was diagnosed with MS in 1999 and, contrary to my Narrow Minded, NHS Employed, Pharma Sponsored, Spotty Bow Tied Neurologist's advice, am off to Bulgaria this Sunday to undertake a dopplerscan and hopefully 'Liberation' procedure.    

My Neurologist (who, you may have noticed, I don't have a lot of time for), has tried every trick in the book to try and put me off going - pointing out expense and safety issues as two of him main 'concerns'. But as I pointed out to him, in 10 years he hasn't been able to help me in any way. Thanks goodness for my WONDERFUL MS nurse who has always had a very open mind and has always been understanding and supportive of anything that I wanted to try, including LDN.    

I have been on LDN for the past 11 months but haven't seemed to get on very well with it at all so I am really excited about this treatment, especially after reading some of the stories here, and excited that I may regain some at least, of the life that I have lost since I was 29.    

I will return to this page after the treatment and 'report' back about my experience.     Paul
February 22, 2011, 5:53:39 PM EST – Like – Reply

violeta Paul,best wishes!!!!!!!!!!!!!!!!!!!!
February 22, 2011, 6:18:01 PM EST – Like – Reply

Brian Thanks Paul     Really loking forward to hearing your expereince of angio     Can I ask how much the operation costs in Bulgaria?
February 23, 2011, 4:29:17 AM EST – Like – Reply

dsmiles4u2
I was liberated in Oct.....the best thing I ever did...Paul be prepared you may need this done several times..and that's OK.Good Luck my MonSter fan ♥♥
February 23, 2011, 7:03:18 AM EST – Like – Reply

Carri
Best wishes Paul! I can't wiat to hear about your results! February 25, 2011, 8:21:21 PM EST – Like – Reply

Elma Scott
I see from Mike F's post that he was misdiagnosed before getting correctly diagnosed with MS.  

On an average, MS patients get referred to 2-3 specialists before being referred to a Neurologist, and were correctly diagnosed on an average 3.5 years after the onset of their symptoms after multiple misdiagnoses. There is even a difference in the type of misdiagnosis between men and women!  
- Were you misdiagnosed too?  
- What was the misdiagnosis?  
- How long after you first went to the Doctor about your symptoms were you correctly diagnosed with MS?
February 22, 2011, 10:00:03 AM EST – Like – Reply

Phillip David Evans
Hi,  
I was diagnosed in '02 and am plodding along OK.    

Interesting films!  As always with medical progress we stand on the brink of conspiracy theory, and certainly Big Pharma has a lot invested in *not* curing M.S.  Could Dr. Z not approach the U.K NHS for an extended, medicaly acceptable trial?  The NHS is ALWAYS looking for ways to save money and a significant reduction in relapses along with a reversal/halting of physical deterioration would certainly have a significant charm to the money people over here.    

On another note, I didnt understand from the films but is CCSVI directly indicated by observable constriction of the jugular?  Would a good first place for research be to scan all/a large number of us affected by M.S to see if this is common?  I guess that Dr Z and his compadres will have thought of that.    

Phill
February 22, 2011, 3:40:33 AM EST – Like – Reply

Mike F
Good evening! I was dx'd back in 1994 with RRMS, although I was mis-dx'd 3 yrs earlier with what was thought to be Carpal Tunnel of my right arm/hand.    

I've been on everyone of the CRAB drugs and currently on TYSABRI. After reading news clips about more cases of PML and deaths resulting from some of these cases, I am going to dis-continue the TYSABRI.    

I currently have an e-mail/phone call into the facility in RI that performs the CCSVI procedure in my area;I'm from NH.    

I am hoping to hear from them soon and to get the ball rolling; I need to know from them how and where do I begin.    

I called my Neuro today to let her know about me dis-continuing  the TYSABRI, but she is on vacation.    

With the help of friends who have MS and have had the procedure, I am reading many articles and websites explaining CCSVI.    

These same friends have already had the procedure done and have experienced many life-changing events!!    

Thank you for listening.....
February 21, 2011, 10:52:07 PM EST – Like – Reply

Susan Marriott
I was diagnosed with MS 14 years ago and have been on betaferon for 13 years.  

I had a doppler ultrasound which showed that I met the criteria for CCSVI. I showed the results of the ultrasound to my GP and he was really quite excited and without hesitation wrote a referral to Prof.K.T. (not sure wether we are allowed to use names) for a Jugular Venogram.  

The day before my proceedure an extremely dejected and disappointed Prof.K.T. rang me himself to cancel, saying the medical board had suspended these proceedures wanting more research. THE DAY BEFORE. That was in July 2010 and I am still waiting.  

Regardless of wether it is MS, CCSVI, or any other condition that has'nt been given a name yet, surely narrowing or blockages of the jugular veins and even reflux (blood flowing back to the brain instead of away from it) cannot be good for you. It definately doesn't sound good to me.   Why can't we be in charge of our own bodies.
February 21, 2011, 5:16:12 PM EST – Like – Reply

Fi
I went to Poland in November, very intense week + Polish cliics + hospital were an eye opener.   My feet + hands warmer but as yet nothing else yet, the whole experience was hard going + took a lot out of me bt glad had done as nothing else out there for secondary MS
February 21, 2011, 2:16:08 PM EST – Like – Reply

julieannboon@btinternet.com
I was prescribed rebif 4 months after i was diagnosed I was told that the symptoms were flu like and would only last a couple of months and there was no mention of anxiety being a side effect. 8 months on I was still suffering flu like symptoms and massive panic attacks My MS wasn't the problem it was the medication so i decided to come off it. I have had about 3 relapses since 2006 I know i'm one of the lucky ones and my positive atittute towards MS has been a massive plus. I think too much concentration and money is poured into disease modyfing drugs when really a cure is whats needed but like every thing else in life it's all about money. Trails on CCSVI should be done. My understanding of it is that a scan would be carried out to see if the artery/vein is narrow and the operation is carried out on people with heart problems (I may be wrong and it's probably not that simple) Only thing with MS is that there is always hope that a cure may be found but as time goes on it's just seems to me that drug companies would lose far too much money and it's obvious that they would be cynical about CCSVI.
February 21, 2011, 1:43:47 PM EST – Like – Reply

Mary McGuinness
I have MS, and until recently, so do 3 of my brothers.  Yesterday I discovered that a fourth brother has also been diagnosed with the disease.  This means that from a family of 10, 5 siblings have MS.  We are constantly told that this disease is not genetic, but how does this explain a 50% occurrence in the 1 family?
February 21, 2011, 11:33:31 AM EST – Like – Reply

Ginger MacQueen
Many of the "immune system" based hypothesis about MS are probably erroneous. CCSVI is a congenitral venous malformation meaning we are born with it and it IS passed on through our genes. This too is a hypothesis but from all the considerable research I have done on it over the past year, this is the only hypothesis that makes sense and explains EVERYTHING about MS including the blood brain barrier breach. February 21, 2011, 12:08:41 PM EST – Like – Reply

Brian
Hi Mary    
This article would suggest that you are on to something     http://www.readingchronicle.co.uk/news/roundup/articles/2011/02/23/50781-festival-will-highlight-ms-dangers/
February 23, 2011, 5:17:22 AM EST – Like – Reply

mwilliams@beld.net
just goes to show you this darn disease rycan hit anyone at any time, sorry to hear of your familys involvemebt could that mean enviro,ment is the base of the diseasem, or genetics..hmmm March 21, 2011, 10:41:11 AM EDT – Like – Reply

Ginger MacQueen
It has been almost 11 months since I had the venoplasty to open my colapsed jugular veins. Thousands of MS patients have had the treatment and most have realized some benefit, however, because this is such new territory in the treatment for MS, Interventional radiologists have been finding that patients tend to re-stenose, (the veins colapse again), over time. My left jugular qould net remain open during the venoplasty despite several attempts with larger balloons so I ended up with a metal stent to keep that vein open and flowing. Now a group of Interventional radiologists at a clinic in Newport Beach, California haqve devise protocols to ensure patients will not require stents nor will they re-stenose. The protocol involves using larger balloons to stretch the rubbery veins beyond the point where they will snap back to their original colpased state. The Dr's ensure the blood remains flowing by essentially "damaging" the valve to the jugulars and azygos. In many cases the valve is not functioning properly or it is malformed or upside down and not working properly anyway. A year ago some naysaying Dr's suggested that damaging this valve would cause the inter-cranial pressure to fluctuate and increase abd it would eventually kill us. But dont worry: They came to this conclusion because they were comparing the jugular veins to varicose veins in the legs and the valves there function a whole differently than in the neck.    

My symptoms prior to having the venopllasty were bladder spasms, mild cog fog, balance, spasticity in legs, head and neck, excruciating neck and head pain when I lay down, neurological pain, tremor, numbness and tingling, choking, heat intollerance, my feet were always ice cold and would turn blue, sleep disorder and foot drop. SInce my treatment I am happy to report that all my symptoms have gone. My right side of my body was more affected than my left and I still have weakness in my right leg but I have been going tp physiotherapy and the gym religiously and over the past 11 months I am getting stronger.    

One thing that needs mentioning is that this is not a miracle cure for MS. It is a treatment for a venous issue, plain and simple. The better the shape that you are in prior to the treatment will dictate how quickly you will feel benefits from the venoplasty. It's like any medical procedure. If you are out of shape and not taking care of yourself it will take you longer to recover. I didnt get sick over night so I never expected to be 100% immediately after the treatment. In fact, when I went for the procedure I kept my expectations very low. I told myself that "if it just stops further attacks and progression and Im still left with my base line symptoms (noted above) I will be happy."    

Some Doctors are saying it's placebo effect. I disagree. Before I went for the treatment many friends told me that when they were treated their vision improved and they no longer needed their reading glasses. I was expecting this to happen to me too. Sadly, it did not. SO if you beleive this is placebo effect how do you explain that one? One thing that I never expected to improve because I didnt realize I was deficient is my sense of smell and taste! They both improved and I had zero expectation of that happening!! SO I beleive that this dispells the placebo question quite nicely.     Now 11 months later I am ecstatic to say that I am still feeling good and I have a quality life again! I can make positive plans for my future where before I only had to look forward to a wheelchair and home care as the disease progressed. A dream of my husband's and myself was always to go and live in Hong Kong but we knew that could never be as they have no MS drugs therre and I could never handle the excessive heat and humidity of their spring and summer months. In just a few weeks we will be leaving Canada for good to move to our new home and life in Hong Kong.    

Whether or not researchers find a link between MS and CCSVI is irrelevent. CCSVI is a venous disorder that involves drainage of the brain. A back up of deoxygenated blood is not healthy to anyone and Doctors in Canada recognize this as they perform venoplasties on non MS patients every day. Kidney dialysis patients suffer from colapsing jugulars and are treated with the very same venoplasty procedure that MS patients in Canada are being denied. Why is it ok to help one group of people and not another? If you would like to read more about my experience before and after treatment you can read my blog at http://www.iamsickofms.blogspot.com/

This is a link to the video neews show of my treatment in Poland by CBC The National   http://www.cbc.ca/news/health/story/2010/04/12/ginger-macqueen-multiple-sclerosis-ccsvi-surgery-poland.html
February 21, 2011, 11:03:13 AM EST – Like – Reply

sabrina
Is CCSVI a way to "get rid" of MS? Who knows! Maybe one day somebody will discover something else and nobody will think about CCSVI anymore. But now, everybody is looking at this technique with big hopes. Indeed, in Italy (especially in the city where I live), neurologists and surgeons are studying: I have MS and they already called me to study my vascular situation. The test took 40-50 minutes, NO pain (it is a ultrasound of neck and head veins). I am waiting for results but I already know I'll have to wait for a while: since they are studying, they have to build a huge number of cases, both sick and healthy people, to check the real proportion between lesions and disease/healthy situation. At the end of the study, they have to settle down guidelines: who really needs surgery, who can wait, who should not have. It will take a while, but I can wait if this means I can recover from this disease. Of course, it is not definitive: the cause behind MS is not yet clear/discovered, so no cure at this moment. I'll wait for stem-cells therapy. Sorry for my poor English, I am Italian. February 21, 2011, 10:58:46 AM EST – Like – Reply

Ginger MacQueen
Sabrina-CCSVI is a genetic venous disorder. Whether or not there is a link between MS and CCSVI is irrelevent. The veins that drain the central nervous system from the brain back down to the heart are essential to one's health.
February 21, 2011, 11:51:00 AM EST – Like – Reply

Sunday, September 25, 2011

9.25.11 - we need all the help that we can get

It makes me happy when celebrities can lend their help in fight against MS. There is still so much that many people don't understand about Multiple Sclerosis. I try to raise awareness by being open about living with MS and answering any questions that I can to help people learn. One celebrity that is helping to raise awareness is Tommy Hilfiger. I knew that I liked his clothing, but now I like him even more. Thanks, Tommy!

Tommy Hilfiger's Personal Connection to Multiple Sclerosis
The famed designer tackles MS with conviction and style -- in part because his sister has the disease.

By Chloe Thompson WebMD the Magazine - Feature Reviewed by Louise Chang, MD

Designer Tommy Hilfiger has played a leading role in the world of fashion since he was 18. So it's no surprise that his foray nearly 15 years ago into a different arena -- giving back -- was done with style. The red, white, and blue ski jackets he designed for the Nancy Davis Foundation for Multiple Sclerosis were an instant hit at a fundraiser. "Everybody loved them," Hilfiger, 59, recalls. That was just the beginning of his relationship with the foundation as well as a personal friendship with Davis, the daughter of Marvin Davis, a businessman in the oil and entertainment industry. Shortly after his fashionable contribution, Davis asked Hilfiger to be on the foundation's board of directors and serve as co-chair of the annual fundraising gala, Race to Erase MS. He eagerly accepted. His involvement was particularly apt -- his younger sister has MS, a neurological disease that attacks the central nervous system, resulting in problems with muscle control, vision, balance, and sensation (such as numbness). MS affects about 400,000 Americans, with around 200 new diagnoses per week, according to the National Multiple Sclerosis Society. Since she was first diagnosed when he was a teen, Hilfiger has watched Dorothy, 58, struggle with the condition. "When you see someone's life change as a result of a disease, it really hits home," Hilfiger says. "I'm a healthy person, and I'm very grateful being able to get up in the morning. Seeing [Dorothy] suffer makes me feel that I should be able to do something.”

Hilfiger and the Race to Erase MS

Since he joined the board in 1995, Hilfiger has regularly participated in fashion shows and golf tournaments to promote the foundation's mission and help raise funds and awareness. Davis founded the charitable organization in 1993, two years after she was diagnosed with MS, and to date has raised more than $30 million to help find a cure for MS. "I've watched Nancy relentlessly grow the organization," Hilfiger says. "I just wanted to be able to help out the best way I could.” This year, the Race to Erase MS gala is on April 29 in Los Angeles and primarily funds Davis' Center Without Walls program, which links seven multidisciplinary scientific programs and experts across the country to advance research toward finding a cure. "Hopefully, [that] will happen sooner rather than later," Hilfiger says. "If I could help out, I would do whatever I could possibly do, but certainly now the doctors are the ones who really deserve all the credit."

Tommy Hilfiger and Dee Ocleppo walk the orange carpet [at the 2009 Race to End MS gala]

Thursday, September 22, 2011

9.22.11 - an inspiration

I've recently started following several RSS feeds about MS and I came across this inspirational story.

Winchester resident's nasty fall inspires an epic walk


Winchester, MA —
As he sat in front of his television at home last May, unable to sit up or reach the remote control that rested just a few feet away on a table, Winchester native Stephen Homsey began to think.

He knew his injuries would heal — although he had broken his back and bones during a bad fall, doctors told him he would recover — but he began thinking about what life would be like for someone who wasn’t so lucky.

Someone, he thought, with Multiple Sclerosis, a nervous system disease that affects the brain and spinal chord and can lead to, among other symptoms, weakening of the muscles and loss of coordination and balance.

“I couldn’t take that fall and then not do something positive with it,” said Homsey.

Next May, Homsey intends to walk across the United States from Boston to San Diego in an effort to raise money for MS as well as produce a documentary about MS patients he meets on his journey.

The fall

It was May 10, 2009 — Mother’s Day — when Homsey, now 26, was in Boston and accidentally found himself locked out of an apartment building on the building’s rooftop, where he had gone with some friends to get a better view of the city.

Homsey, an athletic young man who played soccer and wrestled at Winchester High School, took a look at some pipes on the side of the building and decided he could climb down.

He was wrong.

“I was making progress but the pipe broke, and I fell 40-plus feet to the ground,” he said. “I broke both heels, an ankle, my left wrists in two spots and my back.”

Homsey said he knew he was lucky he wasn’t injured worse, and extremely lucky that doctors projected he would make a full recovery.

“After I got home from the hospital, we had a makeshift setup in our living room. So I would sit there and watch TV all day.

“It was extremely frustrating, because the controller was two feet to my right but I couldn’t get there. I started thinking about how some people have to deal with that their whole lives.”

Homsey said he started formulating his plan to walk across the country during his six months of recovery. 

“I’ve always wanted to see the country, and I thought, “What a better way to do it than to walk for MS?”

The walk

Homsey, who manages an indoor sports facility in Maryland where he now lives, said what started out as a novel idea started getting more and more plausible as his recovery progressed.

He said he was almost fully functional last November, and although he is still gaining some of his strength back in his left foot, believes he’ll be able to make the 3,453-mile odyssey with some help along the way.

“My plan is to stay with as many families affected by MS as possible,” said Homsey, who will camp out or go to budget motels the remaining nights. “A big part of this is that I want to film a documentary about my journey and about people all over the country who I talk to who have MS.”

Homsey said he is currently working on getting the National MS Society to partner with him on the documentary, which he believes would be an excellent tool for the organization to use in its fundraising campaigns.

He said he got the idea from a group of people he found who walked across the country last year to support breast cancer research.

“They had a lot of great suggestions,” he said, including pushing his belongings on a three-wheel pushcart instead of carrying a heavy backpack.

Logistics

Homsey has already planned out his trip, touching everything from the clothes he’ll wear to how many miles and what locations he plans on hitting every day.

In tribute to the source of the walk, he’ll start out May 10, 2011 — two years after his fall. Homsey will go from Boston through Connecticut, New York, New Jersey and Pennsylvania before arriving in Lexington, Va. by June 8.

After that, he plans to meander through Tennessee, Georgia, Alabama and Mississippi before reaching Memphis, Tenn. on July 11.

Then, because a commitment he made to his employer, he may be required to fly back to Maryland for a few days to help them out with an important event.

“It certainly will be odd,” he said, traveling in one hour the distance it just took him months to walk.

After flying back to Memphis, Homsey will pass through Arkansas and Oklahoma before reaching Amarillo, Texas on Aug. 16.

The toughest part of the journey will then follow, as he’ll have to pass through the heat of the desert in New Mexico and Arizona in August and September.

“That’s probably the thing I would worry most about — camping out with coyotes and other dangerous animals,” said Homsey, who, although traveling light, will need to haul around a tent, his laptop and other essentials in the heat.

If all goes as planned, Homsey should reach San Diego, Calif. on Oct. 11, 2011.

“I’m sure there will be a big meal, a good night’s sleep and some beach time,” he said, smiling.

Dealing with disbelief

Homsey admitted many of his friends and family members are still trying to come to terms with his decision to walk across America.

“At first it was disbelief,” he said, adding that they asked him whether he was crazy. “Then I started actually pushing it, and started a nonprofit, and then they turned very supportive.”

Still, he said his parents are concerned for his safety, and will no doubt be checking in on him quite frequently.

Homsey is currently taking a 12-mile walk every week to get ready, as well as doing some strength training in anticipation of hauling around his “luggage.”

“I love it,” he said of the thought of his impending challenge. “When I get out on my 12-mile walks, as weird of its sounds, its some of the happiest time of my week.

“I can’t wait to get out across America and meet people I’d never imagined meeting,” he said.

Asked whether he got any inspiration from another cross-country traverser — the legendary movie figure Forrest Gump — Homsey laughed.

“That’s my favorite movie, so maybe there’s some inspiration there,” he said.

Those interested in donating to Homsey’s non-profit organization or learning more about his efforts can visit steps4ms.org.

Copyright 2010 The Winchester Star. Some rights reserved

Wednesday, September 21, 2011

9.21.11 - medications used in the treatment of multiple sclerosis

Following the idea of my previous posts, I am going to share information from different websites that discuss aspects of MS and include my personal experiences.

Comparing Drugs for Multiple Sclerosis

Laura Dean, MD.
Created: February 11, 2011.

Multiple sclerosis (MS) is an autoimmune disease of the central nervous system. MS affects the myelin coating of nerves, interrupting nerve conduction and leaving lesions that can be seen on brain scans.

Symptoms of MS can be unpredictable, and include changes in sensation, muscle weakness, and problems with balance and coordination. Symptoms may gradually develop and worsen over time, or more commonly, occur in acute attacks (relapses) followed by symptom-free periods (remissions). About 85% of patients have the relapsing-remitting form of MS (RRMS), and most cases eventually develop into a secondary progressive form (SPMS).

The management of MS includes treating symptoms (e.g. muscle relaxants for muscle spasms) and acute flare-ups (e.g. high dose steroids for sudden loss of vision). Disease-modifying drugs are used to slow the progression of MS. These drugs modify the immune response and include the β interferons (Avonex, Rebif, Betaseron, and Extavia), glatiramer acetate (Copaxone), mitoxantrone (Novantrone) and natalizumab (Tysabri).

The "Drug Class Review on Disease-modifying drugs for Multiple Sclerosis" compares the safety and effectiveness of seven drugs. A summary of the findings is below.

How do disease-modifying drugs compare in multiple sclerosis?

In patients with relapsing-remitting multiple sclerosis, Avonex is less effective than Rebif and Betaseron for preventing relapse. Fair evidence suggests that Rebif is similar to Avonex for slowing disease progression. Evidence comparing Betaseron to Avonex for preventing disease progression was conflicting, with one trial showing Betaseron more effective for slowing disease progression, but no difference between the drugs in measures of disability.
No differences were found between Copaxone and Rebif or Betaseron in either relapse rates or disease progression.
Direct comparisons are lacking in other types of multiple sclerosis. Natalizumab and mitoxantrone have not been directly compared to other disease-modifying drugs. [details]

How do disease-modifying drugs compare in clinically isolated syndrome?

Compared to placebo, the following drugs were more effective at reducing the chances of a clinically isolated syndrome converting into multiple sclerosis: Avonex, Betaseron, Copaxone, and Rebif.
There are no studies of Novantrone or Tysabri in patients with a clinically isolated syndrome. [details]

How do disease-modifying drugs compare in safety?

Interferons appear to share a similar rate of adverse events. Increases in liver enzymes are common, but most are transient and asymptomatic. Avonex had the lowest rate of injection site reactions (9%, compared to ~ 60% for Betaseron and Rebif) but flu-like symptoms were about twice as common.
Data are limited for other adverse events, such as for depression, but suggest a lower rate of depression in patients taking Rebif compared with other interferons. Mitoxantrone has been linked with acute leukemia (2 in 1620 patients) and cardiotoxicity (incidence 0.15%), and natalizumb has been linked with progressive multifocal leukoencephalopathy (incidence 0.001%). [details]

How do patient factors affect the safety and effectiveness of disease-modifying drugs?

Observational studies of women taking beta interferons or glatiramer in pregnancy did not find an increase in risk of adverse events, but there is not enough evidence to determine the safety of multiple sclerosis drugs in pregnancy.
One analysis found that African-American patients were more likely to experience exacerbations with Avonex and Rebif compared to white patients.
There is some evidence that response to beta interferons and glatiramer differs in men and women, but there is no evidence that this difference favors one product over another. [details]

Drugs included in this review

Generic Name        Trade Names
Glatiramer Acetate                   Copaxone

Glatiramer Injection(gla tir' a mer)

Last reviewed: February 1, 2009.

Why is this medication prescribed?

Glatiramer is used to reduce episodes of symptoms in patients with relapsing-remitting multiple sclerosis. Glatiramer is in a class of medications called immunomodulators. It works by stopping the body from damaging its own nerve cells (myelin).

How should this medicine be used?

Glatiramer comes as a solution to inject in the fatty layer just under the skin (subcutaneously). It is usually injected once a day. To help you remember to inject glatiramer, inject it around the same time every day. Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand. Use glatiramer exactly as directed. Do not use more or less of it or use it more often than prescribed by your doctor.
You will receive your first dose of glatiramer in your doctor's office. After that, you can inject glatiramer yourself or have a friend or relative perform the injections. Before you use glatiramer yourself the first time, read the written instructions that come with it. Ask your doctor or pharmacist to show you or the person who will be injecting the medication how to inject it.
Glatiramer comes in prefilled syringes. Use each syringe only once and inject all the solution in the syringe. Even if there is still some solution left in the syringe after you inject, do not inject again. Dispose of used syringes in a puncture-resistant container. Talk to your doctor or pharmacist about how to dispose of the puncture-resistant container.
You can inject glatiramer into seven parts of your body: right and left arms, thighs, and hips; and lower stomach. There are specific spots on each of these body parts where you can inject glatiramer. Refer to the diagram in the manufacturer's patient information for the exact places you can inject. You should inject in each of the body parts once a week, and you should pick a different place on the body part each time. Keep a list of the places where you have given injections so that you will not inject in these places again until some time has passed.
To inject glatiramer, follow these steps:
  1. Remove one blister pack from the carton of glatiramer syringes and place it on a clean flat surface. Wait 20 minutes to allow the medication to warm to room temperature.
  2. Wash your hands thoroughly with soap and water and dry them with a clean towel.
  3. Peel back the paper label and remove the syringe from the blister pack. Check your pre-filled syringe to be sure it is safe to use. It should be labeled with the correct name of the medication and should contain a clear colorless solution. Do not use the syringe if it is expired, is cloudy, or contains any particles. Small air bubbles in the syringe will not cause any problems and you should not try to remove them.
  4. Wipe the place on your skin where you will inject glatiramer with a fresh alcohol pad and wait several seconds to allow it to dry.
  5. Pick up the syringe like a pencil and remove the needle cover.
  6. Use your other hand to pinch a 2-inch (5-centimeter) fold of skin between your thumb and index finger.
  7. Hold the syringe at a 90-degree angle to your body and push the needle straight into your skin. When the needle is all the way in, let go of the pinched fold of skin.
  8. Hold the syringe steady while slowly pushing down the plunger until the syringe is empty.
  9. Pull the needle straight out.
  10. Press a dry cotton ball on the injection site for a few minutes, but do not rub it.

Glatiramer controls multiple sclerosis but does not cure it. Continue to use glatiramer even if you feel well. Do not stop using glatiramer without talking to your doctor.

Other uses for this medicine

This medication may be prescribed for other uses; ask your doctor or pharmacist for more information.

What special precautions should I follow?

Before taking glatiramer,
  • tell your doctor and pharmacist if you are allergic to glatiramer, mannitol, or any other medications.
  • tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking. Your doctor may need to change the doses of your medications or monitor you carefully for side effects.
  • tell your doctor if you have or have ever had kidney disease.
  • tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. If you become pregnant while using glatiramer, call your doctor.
  • you should know that you may have a reaction immediately after you inject glatiramer. You may experience the following symptoms: flushing, chest pain, pounding heartbeat, anxiety, trouble breathing, closing of the throat, and hives. This reaction is most likely to occur several months into your treatment, but may happen at any time. These symptoms will usually go away without treatment in a short time. Get emergency medical care if these symptoms become severe or last longer than a few minutes. It is important to tell your doctor if this happens.

What special dietary instructions should I follow?

Unless your doctor tells you otherwise, continue your normal diet.

What should I do if I forget a dose?

Inject the missed dose as soon as you remember it. However, if it is almost time for the next dose, skip the missed dose and continue your regular dosing schedule. Do not inject a double dose to make up for a missed one.

What side effects can this medication cause?

Glatiramer may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
  • pain, redness, swelling, itching, or lump in the place where you injected glatiramer
  • weakness
  • flushing
  • depression
  • abnormal dreams
  • pain in the back, neck, or any other part of the body
  • severe headache
  • loss of appetite
  • diarrhea
  • nausea
  • vomiting
  • weight gain
  • swelling of the hands, feet, ankles, or lower legs
  • purple patches on skin
  • joint pain
  • confusion
  • nervousness
  • crossed eyes
  • difficulty speaking
  • shaking hands that you cannot control
  • sweating
  • ear pain
  • painful or changed menstrual periods
  • vaginal itching and discharge
  • urgent need to urinate or defecate
  • tightness in muscles
  • white patches in the mouth

Some side effects can be serious. The following symptoms are uncommon, but if you experience any of them, call your doctor immediately. In some cases, your doctor may tell you to stop using glatiramer:
  • dizziness
  • excessive sweating
  • chest pain
  • sore throat, fever, chills, and other signs of infection
  • runny nose
  • coughing
  • fast heartbeat
  • fainting
  • skin rash
  • hives
  • itching
  • difficulty breathing or swallowing
  • very severe pain at the injection site

Glatiramer affects your immune system, so it may increase your risk of developing cancer or a serious infection. Talk to your doctor about the risks of using this medication.
Glatiramer may cause other side effects. Call your doctor if you have any unusual problems while using this medication.
If you experience a serious side effect, you or your doctor may send a report to the Food and Drug Administration's (FDA) MedWatch Adverse Event Reporting program online [at http://www.fda.gov/Safety/MedWatch] or by phone [1-800-332-1088].

What storage conditions are needed for this medicine?

Keep this medication in the container it came in, tightly closed, and out of reach of children. Store it in a refrigerator but do not freeze it. If you will not have access to a refrigerator, you can store glatiramer at room temperature for up to 7 days, but do not expose it to bright light. Throw away any medication that is outdated or no longer needed. Talk to your pharmacist about the proper disposal of your medication.

In case of emergency/overdose

In case of overdose, call your local poison control center at 1-800-222-1222. If the victim has collapsed or is not breathing, call local emergency services at 911.

What other information should I know?

Keep all appointments with your doctor.
Do not let anyone else use your medication. Ask your pharmacist any questions you have about refilling your prescription.
It is important for you to keep a written list of all of the prescription and nonprescription (over-the-counter) medicines you are taking, as well as any products such as vitamins, minerals, or other dietary supplements. You should bring this list with you each time you visit a doctor or if you are admitted to a hospital. It is also important information to carry with you in case of emergencies.

Other names

  • copolymer-1

American Society of Health-System Pharmacists, Disclaimer

                                                                                    
Interferon β 1a                          Avonex
                                                       Avonex PS
Once-A-Week AVONEX (interferon beta-1a) multiple sclerosis treatment    Interferon beta-1a Subcutaneous Injection(in ter feer' on) 
Last reviewed: September 1, 2008.

Why is this medication prescribed?

Interferon beta-1a is used to prevent episodes of symptoms and slow the development of disability in patients with relapsing-remitting multiple sclerosis (MS, a disease in which the nerves do not function properly and patients may experience weakness, numbness, loss of muscle coordination and problems with vision, speech, and bladder control). Interferon beta-1a has not been shown to help patients with chronic progressive MS. Interferon beta-1a is in a class of medications called immunomodulators. It is not known how interferon beta-1a works to treat MS.

How should this medicine be used?

Interferon beta-1a subcutaneous injection comes as a solution to inject subcutaneously (under the skin) three times a week. You should inject this medication on the same 3 days every week, for example, every Monday, Wednesday, and Friday. The injections should be spaced at least 48 hours apart, so it is best to inject your medication around the same time of day on each of your injection days. The best time to inject this medication is in the late afternoon or evening. Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand. Use interferon beta-1a exactly as directed. Do not use more or less of it or use it more often than prescribed by your doctor.
Your doctor may start you on a low dose of interferon beta-1a and gradually increase your dose, not more than once every 2 weeks.
Interferon beta-1a controls symptoms of MS, but does not cure it. Continue to use interferon beta-1a even if you feel well. Do not stop using interferon beta-1a without talking to your doctor.
You will receive your first dose of interferon beta-1a in your doctor's office. After that, you can inject interferon beta-1a yourself or have a friend or relative perform the injections. Before you use interferon beta-1a yourself the first time, read the written instructions that come with it. Ask your doctor or pharmacist to show you or the person who will be injecting the medication how to inject it.
Interferon beta-1a comes in prefilled syringes. Use each syringe and needle only once and inject all the solution in the syringe. Even if there is still some solution left in the syringe after you inject, do not inject again. Throw away used syringes and needles in a puncture-resistant container kept out of reach of children. Talk to your doctor or pharmacist about how to throw away the puncture-resistant container.
You can inject interferon beta-1a in areas of your body with a layer of fat between the skin and muscle, such as your thigh, the outer surface of your upper arms, your stomach, or your buttocks. If you are very thin, only inject in your thigh or the outer surface of your arm for injection. Use a different spot for each injection. Keep a record of the date and spot of each injection. Do not use the same spot two times in a row. Do not inject near your navel (belly button) or waistline or into an area where the skin is sore, red, bruised, scarred, infected, or abnormal in any way.
To inject interferon beta-1a, follow these steps:
  1. Remove the prefilled syringe from the refrigerator and allow it to warm to room temperature for about 30 minutes before using. Do not use a heat source such as hot water or a microwave to warm the syringe.
  2. Check the syringe to be sure it is safe to use. The syringe should be labeled with the correct name of the medication and an expiration date that has not passed and should contain a clear to slightly yellow solution. If the syringe is expired, or the solution is cloudy, discolored, or contains particles, do not use it and call your pharmacist.
  3. Set up a clean, well-lit, flat work surface, like a table, to collect all the supplies you will need to inject interferon beta-1a. Assemble these supplies: alcohol wipes, gauze pad, small adhesive bandage, and puncture-resistant container for disposal of used syringes and needles.
  4. Wash your hands well with antibacterial soap.
  5. Choose a spot to inject interferon beta-1a and clean it with an alcohol wipe, using a circular motion. Let the skin air dry.
  6. Remove the cap from the syringe needle.
  7. The syringe should be filled with interferon beta-1a to the 0.5-mL mark. This is a full dose. If your doctor has told you to use less than the full dose, slowly push the syringe plunger in until the amount of medication left in the syringe is the amount your doctor told you to use.
  8. Use your thumb and forefinger to pinch up a pad of skin around the spot where you will inject interferon beta-1a. Hold the syringe like a pencil with your other hand.
  9. Hold the syringe at a 90-degree angle (straight up and down), and push the needle straight into your skin, stopping just underneath the skin.
  10. When the needle is in, let go of the pinched skin and slowly push down on the syringe plunger until the syringe is empty.
  11. Hold a gauze pad near the needle and pull the needle straight out of the skin. Use the gauze pad to apply pressure to the spot for a few seconds. You may cover the spot with a bandage.
  12. Throw away the used syringe, needle, and gauze pad properly.
  13. Apply a cold compress or ice pack to the injection spot to help reduce redness, swelling, or tenderness that may occur.
  14. After 2 hours, check the injection spot for redness, swelling, or tenderness. If you have redness, swelling, or tenderness that does not go away in a few days or is severe, call your doctor.

Other uses for this medicine

This medication may be prescribed for other uses; ask your doctor or pharmacist for more information.

What special precautions should I follow?

Before using interferon beta-1a,
  • tell your doctor and pharmacist if you are allergic to interferon beta-1a, any other interferon product, any other medications, or human albumin.
  • tell your doctor and pharmacist what other prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking. Be sure to mention any of the following: acetaminophen (Tylenol, others); antidepressants; azathioprine (Imuran); cancer chemotherapy medications; carbamazepine (Tegretol); chloramphenicol (Chloromycetin); cholesterol-lowering medications (statins); cyclosporine (Neoral, Sandimmune); gold compounds such as auranofin (Ridaura) and aurothioglucose (Solganol); heparin; iron products; isoniazid (INH, Nydrazid); medications for acquired immunodeficiency syndrome (AIDS) or human immunodeficiency virus (HIV); methotrexate (Rheumatrex); niacin (nicotinic acid); penicillamine (Cuprimine, Depen); phenytoin (Dilantin, Phenytek); rifampin (Rifadin, Rimactane); sirolimus (Rapamune); sulfa antibiotics such as sulfamethoxazole (Bactrim, Septra) and sulfisoxazole (Gantrisin); thyroid medications; and tacrolimus (Prograf). Your doctor may need to change the doses of your medications or monitor you carefully for side effects.
  • tell your doctor if you drink or have ever drunk large amounts of alcohol and if you have or have ever had AIDS or HIV; an autoimmune disease (a disease in which the body attacks its own cells; ask your doctor if you are not sure if you have this type of disease); blood problems such as anemia (low red blood cells) or easy bruising or bleeding; anxiety, depression, or mental illness; cancer; seizures; or kidney, liver, or thyroid disease.
  • tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. If you become pregnant while using interferon beta-1a, call your doctor immediately.
  • if you are having surgery, including dental surgery, tell the doctor or dentist you are using interferon beta-1a.
  • ask your doctor about the safe use of alcoholic beverages while you are using interferon beta-1a. Alcohol can make the side effects of interferon beta-1a worse.
  • you should know that you may have flu-like symptoms such as headache, fever, chills, sweating, muscle aches, back pain, and tiredness that last for a day after your injection. Your doctor may tell you to take an over-the-counter pain and fever medication to help with these symptoms. These symptoms usually improve or go away over time. Talk to your doctor if these symptoms last longer than the first few months of therapy, or if they are difficult to manage or become severe.

What special dietary instructions should I follow?

Unless your doctor tells you otherwise, continue your normal diet.

What should I do if I forget a dose?

Inject the missed dose as soon as you remember it. If you are scheduled for a dose the following day, skip that dose. Do not inject interferon beta-1a 2 days in a row. Do not inject a double dose to make up for a missed dose. You should return to your regular dosing schedule the following week. Call your doctor if you miss a dose and have questions about what to do.

What side effects can this medication cause?

Interferon beta-1a may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
  • dry eyes
  • dry mouth
  • nausea
  • vomiting
  • stomach pain
  • tight muscles
  • bruising, pain, redness, swelling, or tenderness in the place where you injected interferon beta-1a
Some side effects can be serious. The following symptoms are uncommon, but if you experience any of them, call your doctor immediately:
  • depression
  • thoughts of hurting yourself or others
  • anxiety
  • hives
  • skin rash
  • itching
  • flushing
  • difficulty breathing or swallowing
  • lightheadedness
  • fainting
  • seizures
  • loss of coordination
  • vision problems
  • extreme tiredness
  • lack of energy
  • loss of appetite
  • pain in the upper right part of the stomach
  • yellowing of the skin or eyes
  • pale skin
  • chest pain
  • fast heartbeat
  • difficulty sleeping
  • unusual bruising or bleeding
  • swollen glands in your neck
  • sore throat, cough, fever, chills, or other signs of infection
  • unexplained weight gain or loss
  • feeling cold or hot all the time
  • blackening of skin or drainage in the place where you injected interferon beta-1a
Interferon beta-1a may cause other side effects. Call your doctor if you have any unusual problems while using this medication.
If you experience a serious side effect, you or your doctor may send a report to the Food and Drug Administration's (FDA) MedWatch Adverse Event Reporting program online [at http://www.fda.gov/Safety/MedWatch] or by phone [1-800-332-1088].

What storage conditions are needed for this medicine?

Keep this medication in the container it came in, tightly closed, and out of reach of children. Store it in the refrigerator, but do not freeze it. If a refrigerator is not available, you can store the medication at room temperature away from heat and light for up to 30 days. Throw away any medication that is outdated or no longer needed. Talk to your pharmacist about the proper disposal of your medication.

In case of emergency/overdose

In case of overdose, call your local poison control center at 1-800-222-1222. If the victim has collapsed or is not breathing, call local emergency services at 911.
Logo of American Society of Health-System Pharmacists
American Society of Health-System Pharmacists, Disclaimer
                                                                                    
 
Interferon β 1b                          Betaseron

Interferon Beta-1b Injection(in ter feer' on)

Last reviewed: September 1, 2008.

About your treatment

Your doctor has ordered interferon beta-1b, a biologic response modifier. This medication is used to treat patients with multiple sclerosis (MS), a disease in which the nerves do not function properly and patients may experience weakness; numbness; loss of muscle coordination; and problems with vision, speech, and bladder control. This medication will be injected subcutaneously (under the skin) every other day. Your healthcare provider will show you how to prepare and give the injection.
Interferon beta-1b is a man-made version of a naturally occurring protein. It is used to treat patients with relapsing forms of MS (course of disease where symptoms flare up for a short time, then go away). Interferon beta-1b does not cure MS but may reduce the number of disease flare-ups. Interferon beta-1b may be prescribed for other uses; ask your doctor or pharmacist for more information.
Your healthcare provider (doctor, nurse, or pharmacist) may measure the effectiveness and side effects of your treatment using laboratory tests and physical examinations. It is important to keep all appointments with your doctor and the laboratory. The length of treatment depends on how you respond to the medication.

What special precautions should I follow?

Before using interferon beta-1b,
  • tell your doctor and pharmacist if you are allergic to interferon beta-1b, or any other medications, or human albumin.
  • tell your doctor and pharmacist what other prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking or plan to take. Your doctor may need to change the doses of your medications or monitor you carefully for side effects.
  • tell your doctor if you drink or have ever drunk large amounts of alcohol, if you have or have ever had anemia (low red blood cells) or low white blood cells, blood problems such as bruising easily or bleeding, diabetes, anxiety, depression, mental illness, thoughts of hurting yourself, seizures, trouble falling asleep or staying asleep, or prostate, skin, thyroid, blood, heart, or liver disease.
  • tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. If you become pregnant while using interferon beta-1b, stop using interferon beta-1b immediately and call your doctor.

Administering your medication

Before you administer interferon beta-1b, look at the solution closely. It should be clear and free of floating material. Observe the solution container to make sure there are no leaks and check the expiration date. Do not use the solution if it is discolored, if it contains particles, or if the container leaks or it is expired. Use a new solution, but show the damaged or expired one to your healthcare provider.
It is important that you use your medication exactly as directed. Your healthcare provider may start you on a low dose of interferon beta-1b and gradually increase your dose. Do not change your dosing schedule without talking to your healthcare provider. Your injections should be approximately 48 hours (2 days) apart, so it is best to give them at the same time, preferably in the evening just before bedtime.
Do not inject interferon beta-1b into an area of skin that is irritated, sore, red, bruised, infected, damaged, or abnormal in any way. It is important that you change your injection area each time interferon beta-1b is injected; keeping a record will help you to remember to rotate injection sites. Do not use the same injection area two times in a row. Do not inject interferon beta-1b near the navel (bellybutton) or waistline.
If you miss a dose of interferon beta-1b, inject your next dose as soon as you remember or are able to give it. Your next injection should then be given 48 hours (2 days) after that dose. Do not use interferon beta-1b on 2 days in a row. If you accidentally use more than your prescribed dose, or give it on 2 days in a row, call your healthcare provider right away.

What side effects can this medication cause?

Side effects from interferon beta-1b can occur. Interferon beta-1b sometimes causes a flu-like illness with headache, fever, chills, sweating, muscle aches, tiredness, and general discomfort. Tell your healthcare provider if any of these problems continue or worsen. You should talk with your healthcare provider about whether to take an over-the-counter medication for pain or fever before or after using your dose of interferon beta-1b.
Tell your healthcare provider if any of these symptoms are severe or do not go away:
  • nausea
  • indigestion
  • diarrhea
  • constipation
  • weight gain or weight loss
  • feeling cold or hot much of the time
  • dizziness
  • increased urinary frequency
  • incontinence
  • flushing
  • hair loss
  • joint or muscle weakness or pain
  • leg cramps
  • difficulty falling asleep or staying asleep
  • changes in sex drive or ability (in men)
  • increased menstrual pain

If you experience any of the following symptoms, call your healthcare provider immediately:
  • extreme tiredness
  • lack of energy
  • unusual bruising or bleeding
  • loss of appetite
  • pain in the upper right part of the stomach
  • yellowing of the skin or eyes
  • hives
  • rash
  • itching
  • difficulty breathing or swallowing
  • swelling of the face, throat, tongue, lips, eyes, hands, feet, ankles, abdomen (stomach), or lower legs
  • hoarseness
  • vaginal bleeding or spotting between menstrual periods
  • change in coordination
  • heart palpitations or rapid heart rate
  • chest pain
  • nervousness
  • depression
  • anxiety
  • thoughts of hurting yourself
  • swollen lymph nodes

Interferon beta-1b affects your immune system so it may increase your risk of developing a serious infection. Talk to your healthcare provider about the risks of using this medication.
Interferon beta-1b may cause other side effects. Call your healthcare provider if you have any unusual problems while using this medication.
If you experience a serious side effect, you or your doctor may send a report to the Food and Drug Administration's (FDA) MedWatch Adverse Event Reporting program online [at http://www.fda.gov/Safety/MedWatch] or by phone [1-800-332-1088].

Signs of infection

If you are receiving interferon beta-1b under your skin, you need to know the signs of an injection area infection (an infection at the area where you have given your medication subcutaneously). If you experience any of these signs near an injection area, call your healthcare provider as soon as possible:
  • swelling
  • lump
  • pain
  • irritation
  • redness
  • bruising
  • drainage
  • dark discoloration
  • other skin problems

American Society of Health-System Pharmacists, Disclaimer

Interferon β 1b                          Extavia
                                                                                   
Mitoxantrone                            Novantrone

Mitoxantrone Injection(mye toe zan' trone)

Last Revision: July 1, 2009.

Warning

Mitoxantrone should be given only under the supervision of a doctor with experience in the use of chemotherapy medications.
Mitoxantrone may cause a decrease in the number of white blood cells in the blood. Your doctor will order laboratory tests regularly before and during your treatment to check whether the number of white blood cells in your body has decreased. If you experience any of the following symptoms, call your doctor immediately: fever, chills, sore throat, cough, frequent or painful urination, or other signs of infection.
Mitoxantrone injection may cause damage to your heart at any time during your treatment or months to years after your treatment has ended. This heart damage can be serious and may cause death and can occur even in people without any risks for heart disease. Your doctor will examine you and perform certain tests to check how well your heart is working before beginning treatment with mitoxantrone and if you show any signs of heart problems. If you are using mitoxantrone injection for multiple sclerosis (MS; a condition in which the nerves do not function properly, causing symptoms such as weakness; numbness; loss of muscle coordination; and problems with vision, speech, and bladder control), your doctor will also perform certain tests before each dose of mitoxantrone injection and yearly after you have completed your treatment. These tests may include an electrocardiogram (ECG; test that records the electrical activity of the heart) and an echocardiogram (test that uses sound waves to measure your heart's ability to pump blood). Your doctor may tell you that you should not receive this medication if the tests show your heart's ability to pump blood has decreased. Tell your doctor if you have or have ever had any type of heart disease or radiation (x-ray) therapy to the chest area. Tell your doctor and pharmacist if you are taking or have ever received certain cancer chemotherapy medications such as daunorubicin (Cerubidine), doxorubicin (Doxil), epirubicin (Ellence), or idarubicin (Idamycin), or if you have ever been treated with mitoxantrone in the past. The risk of heart damage may depend on the total amount of mitoxantrone given to a person over a lifetime, so your doctor will probably limit the total number of doses you receive if you are using this medication for MS. If you experience any of the following symptoms, call your doctor immediately: difficulty breathing, chest pain, swelling of the legs or ankles, or irregular or fast heartbeat.
Mitoxantrone may increase your risk for developing leukemia (cancer of the white blood cells), especially when it is given in high doses or together with certain other chemotherapy medications.
Talk to your doctor about the risks of using mitoxantrone injection.
Show full warning

Why is this medication prescribed?

Mitoxantrone injection is used to decrease the number of symptom episodes and slow the development of disability in patients with certain forms of MS. Mitoxantrone injection is also used together with steroid medications to relieve pain in people with advanced prostate cancer who did not respond to other medications. Mitoxantrone injection is also used together with other medications to treat certain types of leukemia. Mitoxantrone injection is in a class of medications called anthracenediones. Mitoxantrone treats MS by stopping certain cells of the immune system from reaching the brain and spinal cord and causing damage. Mitoxantrone treats cancer by stopping the growth and spread of cancer cells.

How should this medicine be used?

Mitoxantrone injection comes as a liquid to be given intravenously (into a vein) by a doctor or nurse in a hospital or clinic. When mitoxantrone injection is used to treat MS, it is usually given once every 3 months for about 2 to 3 years (for a total of 8 to 12 doses). When mitoxantrone injection is used to treat prostate cancer, it is usually given once every 21 days. When mitoxantrone injection is used to treat leukemia, you will continue to receive this medication based on your condition and how you respond to the treatment.
If you are using mitoxantrone injection for MS, you should know that it controls MS but does not cure it. Continue to receive treatments even if you feel well. Talk to your doctor if you no longer want to receive treatment with mitoxantrone injection.
If you are using mitoxantrone injection for MS, ask your pharmacist or doctor for a copy of the manufacturer's information for the patient.

Other uses for this medicine

Mitoxantrone injection is also sometimes used to treat non-Hodgkin's lymphoma (NHL; cancer that begins in a type of white blood cell that normally fights infection). Talk to your doctor about the risks of using this medication for your condition.
This medication may be prescribed for other uses; ask your doctor or pharmacist for more information.

What special precautions should I follow?

Before using mitoxantrone injection,
  • tell your doctor and pharmacist if you are allergic to mitoxantrone injection or any other medications.
  • tell your doctor and pharmacist what other prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking or plan to take. Be sure to mention the medications listed in the IMPORTANT WARNING section. Your doctor may need to change the doses of your medications or monitor you carefully for side effects.
  • tell your doctor if you have or have ever had any blood-clotting problems, anemia (decreased amount of red blood cells in the blood), or liver disease.
  • tell your doctor if you are pregnant or plan to become pregnant. You should not become pregnant while you are using mitoxantrone injection. Talk to your doctor about effective birth control methods that you can use during your treatment. If you become pregnant while using mitoxantrone injection, call your doctor immediately. Mitoxantrone injection may harm the fetus. If you are using mitoxantrone injection to treat MS, even if you are using birth control, your doctor should give you a pregnancy test before each treatment. You must have a negative pregnancy test before the start of each treatment.
  • tell your doctor if you are breastfeeding. Do not breastfeed while you are using mitoxantrone injection.
  • if you are having surgery, including dental surgery, tell the doctor or dentist that you are using mitoxantrone injection.
  • you should know that mitoxantrone injection is dark blue in color and may cause the white parts of your eyes to have a slight blue color for a few days after you receive each dose. It may also change the color of your urine to a blue-green color for about 24 hours after you receive a dose.

What special dietary instructions should I follow?

Unless your doctor tells you otherwise, continue your normal diet.

What should I do if I forget a dose?

Call your doctor right away if you are unable to keep an appointment to receive a dose of mitoxantrone injection.

What side effects can this medication cause?

Mitoxantrone injection may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
  • nausea
  • vomiting
  • diarrhea
  • constipation
  • heartburn
  • loss of appetite
  • sores on the mouth and tongue
  • runny or stuffed nose
  • thinning or loss of hair
  • changes in the area around or under fingernails and toenails
  • missed or irregular menstrual periods
  • extreme tiredness
  • weakness
  • headache
  • back pain

Some side effects can be serious. If you experience any of these symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately:
  • unusual bleeding or bruising
  • small red or purple dots on the skin
  • hives
  • itching
  • rash
  • difficulty swallowing
  • shortness of breath
  • fainting
  • dizziness
  • pale skin
  • yellowing of the skin or eyes
  • seizures
  • redness, pain, swelling, burning, or blue discoloration at the site where the injection was given

Mitoxantrone injection may cause other side effects. Call your doctor if you have any unusual problems while receiving this medication.
If you experience a serious side effect, you or your doctor may send a report to the Food and Drug Administration's (FDA) MedWatch Adverse Event Reporting program online [at http://www.fda.gov/Safety/MedWatch] or by phone [1-800-332-1088].

What other information should I know?

Keep all appointments with your doctor and the laboratory. Your doctor will order certain lab tests to check your body's response to mitoxantrone injection.
Ask your pharmacist any questions you have about mitoxantrone injection.
It is important for you to keep a written list of all of the prescription and nonprescription (over-the-counter) medicines you are taking, as well as any products such as vitamins, minerals, or other dietary supplements. You should bring this list with you each time you visit a doctor or if you are admitted to a hospital. It is also important information to carry with you in case of emergencies.

American Society of Health-System Pharmacists, Disclaimer

Natalizumab                             Tysabri

Natalizumab Injection(na ta liz' you mab)

Last Revision: May 10, 2011.

Notice

[UPDATED Posted 04/22/2011] FDA has updated the natalizumab (Tysabri) Prescribing Information to give new information about the size of the risk of progressive multifocal leukoencephalopathy (PML), a rare but serious brain infection, associated with use of natalizumab for the treatment of multiple sclerosis (MS) and Crohn's disease. The update includes new safety information about patients who have taken other drugs that suppress the immune system, who may be at a higher risk for PML. Natalizumab, in a class of medications called immunomodulators, has been approved by the FDA for the treatment of relapsing forms of multiple sclerosis since November 2004 and for the treatment of moderately to severely active Crohn's disease since January 2008. The revised label includes a table summarizing rates of PML with natalizumab use according to the number of infusions (how long the drug is taken or duration of exposure) and information on a newly identified PML risk factor. For more information visit the FDA website at: http://www.fda.gov/Safety/MedWatch/SafetyInformation and http://www.fda.gov/Drugs/DrugSafety.

Warning

Receiving natalizumab injection alone or with other medications that affect the immune system may increase the risk that you will develop progressive multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death or severe disability). The more doses of natalizumab injection you receive, the greater the risk that you will develop PML.
Tell your doctor if you have or have ever had PML, an organ transplant, or another condition that affects your immune system such as human immunodeficiency virus (HIV), acquired immunodeficiency syndrome (AIDS), leukemia (cancer that causes too many blood cells to be produced and released into the bloodstream), or lymphoma (cancer that develops in the cells of the immune system). Also tell your doctor if you are taking any other medications that affect the immune system such as adalimumab (Humira); azathioprine (Imuran); cyclophosphamide (Cytoxan); cyclosporine (Neoral, Sandimmune); etanercept (Enbrel); glatiramer (Copaxone); infliximab (Remicade); interferon beta (Avonex, Betaseron, Rebif); medications for cancer; mercaptopurine (Purinethol); methotrexate (Rheumatrex); mitoxantrone (Novantrone); oral steroids such as dexamethasone (Decadron, Dexone), methylprednisolone (Medrol), prednisolone, and prednisone (Deltasone); sirolimus (Rapamune); and tacrolimus (Prograf). Your doctor may tell you that you should not use natalizumab injection.
You may need to have a magnetic resonance imaging scan (MRI; a scan that shows pictures of the inside of the body) before you begin treatment with natalizumab.
A program called the TOUCH program has been set up to help manage the risks of natalizumab treatment. You can only receive natalizumab injection if you are registered with the TOUCH program, if natalizumab is prescribed for you by a doctor who is registered with the program, and if you receive the medication at an infusion center that is registered with the program. Your doctor will give you more information about the program, will have you sign an enrollment form, and will answer any questions you have about the program and your treatment with natalizumab injection.
As part of the TOUCH program, your doctor or nurse will give you a copy of the Medication Guide before you begin treatment with natalizumab injection and before you receive each infusion. Read this information very carefully each time you receive it and ask your doctor or nurse if you have any questions.
Also as part of the TOUCH program, your doctor will need to see you every 3 months at the beginning of your treatment and then at least every 6 months to decide whether you should continue using natalizumab. You will also need to answer some questions before you receive each infusion to be sure that natalizumab is still right for you
Call your doctor immediately if you develop any new or worsening medical problems during your treatment. Be especially sure to call your doctor if you experience any of the following symptoms: weakness on one side of the body that worsens over time; clumsiness of the arms or legs; changes in your thinking, walking, balance, speech, eyesight, or strength that last several days; headaches; seizures; confusion; or personality changes.
If your treatment with natalizumab injection is stopped because you have PML, you may develop another condition called immune reconstitution inflammatory syndrome (IRIS; swelling and worsening of symptoms that may occur as the immune system begins to work again after certain medications that affect it are started or stopped), especially if you receive a treatment to remove natalizumab from your blood more quickly. Your doctor will watch you carefully for signs of IRIS and will treat these symptoms if they occur.
Your doctor or pharmacist will give you the manufacturer's patient information sheet (Medication Guide) when you begin treatment with infliximab injection and each time you receive the medication. Read the information carefully and ask your doctor or pharmacist if you have any questions. You can also visit the Food and Drug Administration (FDA) website (http://www.fda.gov/Drugs/DrugSafety/ucm085729.htm) or the manufacturer's website to obtain the Medication Guide.
Tell all the doctors who treat you that you are receiving natalizumab injection.
Talk to your doctor about the risks of receiving natalizumab injection.
Show full warning

Why is this medication prescribed?

Natalizumab is used to prevent episodes of symptoms and slow the worsening of disability in patients with relapsing forms (course of disease where symptoms flare up from time to time) of multiple sclerosis (MS; a disease in which the nerves do not function properly and people may experience weakness, numbness, loss of muscle coordination, and problems with vision, speech, and bladder control). Natalizumab is usually used by people who were not helped by other medications for MS or who cannot take these medications. Natalizumab is also used to treat and prevent episodes of symptoms in people who have Crohn's disease (a condition in which the body attacks the lining of the digestive tract, causing pain, diarrhea, weight loss, and fever) who have not been helped by other medications or who cannot take other medications. Natalizumab is in a class of medications called immunomodulators. It works by stopping certain cells of the immune system from reaching the brain and spinal cord and causing damage.

How should this medicine be used?

Natalizumab comes as a concentrated solution (liquid) to be diluted and injected slowly into a vein by a doctor or nurse. It is usually given once every 4 weeks in a registered infusion center. It will take about 1 hour for you to receive your entire dose of natalizumab.
Natalizumab may cause serious allergic reactions that are most likely to happen within 2 hours after the beginning of an infusion, but may happen at any time during your treatment. You will have to stay at the infusion center for 1 hour after your infusion is finished. A doctor or nurse will monitor you during this time to see if you are having a serious reaction to the medication. Tell your doctor or nurse if you experience any unusual symptoms such as those listed in the SIDE EFFECTS section, especially if they occur within 2 hours after the start of your infusion.
Natalizumab controls the symptoms of MS, but does not cure the condition. Keep all appointments to receive natalizumab even if you feel well.

Other uses for this medicine

This medication may be prescribed for other uses; ask your doctor or pharmacist for more information.

What special precautions should I follow?

Before using natalizumab,
  • tell your doctor and pharmacist if you are allergic to natalizumab or any other medications.
  • tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking. Be sure to mention the medications listed in the IMPORTANT WARNING section. Your doctor may need to change the doses of your medications or monitor you carefully for side effects.
  • tell your doctor if you have or have ever had any of the conditions listed in the IMPORTANT WARNING section. Before you receive each infusion of natalizumab, tell your doctor if you have a fever or any type of infection, including infections that last for a long time such as shingles (a rash that may occur from time to time in people who have had chickenpox in the past).
  • tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. If you become pregnant while using natalizumab, call your doctor.
  • do not have any vaccinations without talking to your doctor.

What special dietary instructions should I follow?

Unless your doctor tells you otherwise, continue your normal diet.

What should I do if I forget a dose?

If you miss an appointment to receive a natalizumab infusion, call your doctor as soon as possible.

What side effects can this medication cause?

Natalizumab may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
  • headache
  • extreme tiredness
  • joint pain or swelling
  • pain in arms or legs
  • swelling of the arms, hands, feet, ankles, or lower legs
  • muscle cramps
  • stomach pain
  • diarrhea
  • heartburn
  • constipation
  • gas
  • weight gain or loss
  • depression
  • night sweats
  • painful, irregular, or missed menstruation (period)
  • swelling, redness, burning, or itching of the vagina
  • white vaginal discharge
  • frequent or painful urination
  • sudden need to urinate right away
  • difficulty controlling urination
  • tooth pain
  • cold sores

Some side effects can be serious. If you experience any of the following symptoms or those mentioned in the IMPORTANT WARNING section, call your doctor immediately:
  • sore throat, fever, cough or other signs of infection
  • rash
  • hives
  • itching
  • difficulty breathing
  • chest pain
  • dizziness
  • chills
  • flushing
  • yellowing of the skin or eyes
  • nausea
  • vomiting
  • unusual darkening of the urine

Natalizumab injection may cause other side effects. Call your doctor if you have any unusual problems while using this medication.
If you experience a serious side effect, you or your doctor may send a report to the Food and Drug Administration's (FDA) MedWatch Adverse Event Reporting program online [at http://www.fda.gov/Safety/MedWatch] or by phone [1-800-332-1088].

What other information should I know?

Keep all appointments with your doctor.
It is important for you to keep a written list of all of the prescription and nonprescription (over-the-counter) medicines you are taking, as well as any products such as vitamins, minerals, or other dietary supplements. You should bring this list with you each time you visit a doctor or if you are admitted to a hospital. It is also important information to carry with you in case of emergencies.

American Society of Health-System Pharmacists, Disclaimer

                                                                                    

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004927/

Further information

Image th-ms10.jpgThis PubMed Clinical Q&A was reviewed by Susan Carson, MPH.
For the full report and evidence tables, please see:
Smith B, Carson S, Fu R, et al. Drug Class Review: Disease-modifying Drugs for Multiple Sclerosis: Final Update 1 Report [Internet]. Portland (OR): Oregon Health & Science University; 2010 Aug. Available at:
http://www.ncbi.nlm.nih.gov/books/NBK50570/.
Logo of National Center for Biotechnology Information (US)
 
I was on Copaxone for the first few years that I was diagnosed.  Although a lot of people don't like the idea of having an injection every day, I preferred it because it was less to remember.  If there's an injection every day, there is no need to remember on which day the injection was.  However, after a couple of years, my doctor felt that I had more relapses than was acceptable to him.  There were also more new lesions showing up on my MRIs.
 
Because of this, my doctor felt that it was necessary to switch my medication.  I started taking Rebif.  As you can see from the information above, Rebif and Avonex are the same medication.  The difference is the dosage.  Rebif is a stronger dose of Avonex.
 
This medication was successful for a couple of years, until I had my last relapse...the worse one that I've had.  I blogged about my relapse when it was happening, in Jan/Feb '09.  After a treatment for the relapse finally worked, my doctor decided to switch my medication once again.  I am currently on Tysabri, which involves a monthly infusion.  Unbelievably, I haven't had a relapse in 2 1/2 years.