tysabri taken off market

My sister has had about 20 Tysabri infusions. She was pretty disabled from the onset of the MS when she took a bad fall and has not been able to walk without aid since. Her MRIs were not showing any progression of MS since starting the Tysabri for a really long time. Plus, she tells me that she feels much better (more energy) after the Tysabri infusions. She starts to notice that she isn't doing well right before her scheduled infusion. So, something appears to making a difference.

Thank you all for your helpful information!!! I got my treatment hours before the bumps were noticed. Were they there before my treatment...I don't know (I don't look at my back!!LOL). Were they there before I went out in that yard...I don't know!!! It's a mystery!!! I emailed my neuro, as he's an hour drive away, and I am not able to drive anymore.

There is a serious disease PML related to Tysabri. The medication was taken off the market several years ago due to three people dying of PML- Progressive Multifocal Leukoencephalopathy. They found out the reason people contracted PML was because they were taking Avonex/and the other MS medications with Tysabri. I think the Tysabri has given me a second chance at helping slow my disease progress, but with out it I would be on no MS medications to slow the disease.

) Believe it or not, my big fear at this point is that if more problems keep cropping up, the FDA will pull Tysabri off the market - and then what will those of us in my position do? If Tysabri is taken off the table, the only thing left is Novantrone or clinical trials. And if I fail Tysabri, I don't know if I would qualify for very many clinical trials anyway. So it's not bravery at all - it's more of a lack of options and blind optimism, I guess, lol.

I saw that a trial had been registered with the US FDA in clinicaltrials.gov when Tysabri was returned to market a trial was registered for Plasmorephis blood filtering to remove Trysabri from the body quickly whren it needed to be removed quickly. I was proud of myself for noticing when that trial was registed with the gov & watched it's successful completion. So I knew about it before it made the news.

This report is from the NASDAQ ******* business site - tracking key issues on the stock market - Biogen's stock fell Friday on heavy trading with the release of this news about their star drug ...... it is astonishing to think they make $1 BILLION dollars a year on this drug. - Lulu 4th UPDATE: EU Reviewing Biogen, Elan's Tysabri; Cites PML (Updates with FDA comments, beginning in the third paragraph.

, meaning they feel terrible and begin having many relapses. Well that sure turned me off! Has anyone gone off Tysabri and had these negative effects? Of course the decision keeps getting tougher for me. Today I began a 5 day steroid i infusion treatment to reduce inflammation from my many recent flare ups. While at the infusion center I spoke with a few people who ere there for their monthly Tysabri infusion. They all are having amazing success with it. All told me how much better they feel.

m still OK Tysabri wise speaking. My neuro likes to reevaluate Tysabri use at 24 months. I had infusion # 18 last week. He thinks I would be an excellent candidate for Tecfidera. He said that if DMD'd were ranked from 1-100, in terms of 'power' Tysabri would be 100 and Tecfidera would be 75/80. As my MS seems to be pretty well under control. I may have needed Tysabri to get it under control. but Tecfidera should be able to keep it under control.

Hi Kat - I will get my 11th infusion in about 10 days. I have had no issues of any kind in conjunction with Tysabri. From the follow up MRI's I've had Tysabri seems to be doing the trick. No new lesions or relapses since I started. You will be tested for the JC virus prior to starting.

As our MS World turns, and we talk about the not-so-distant future of individualized medicine for MSers, i.e., identification of biomarkers (what may make one med work for us, and perhaps not the other). Short of knowing (because it's going to be awhile) exactly what's prone to work for you, or, the "You Should Take This One" smoking gun jumping straight out of the petri dish in a lab, how did you decide to change?

When I was originally on Tysabri in February 2005 (before they voluntarily remove Tysabri from the market temporarily), just two weeks after my very first infusion, my right drop foot was gone, my limp was gone, my optic neuritis completely cleared up, my slurred speech was gone, and I put my walker away--only using my cane for balance which had not completely returned at that point. I was so excited!

09 and I have since switched to Tysabri. With tysabri, all of my symptoms, (tingling, numbness, and pain) are all but gone. For me, Tysabri was more effective then Copaxone, but if you have MS and are thinking of switching, Tysabri is a very dangerous drug, inform yourself before making the decision.

Okay, I've had MS for 13 years. I was just taken off Tysabri in July, I was on that for almost 5 years. I now have to go on Gylena in January, but before I start the new drug...I have to do 6 months of iv steroids. 3 days every month with NO taper! I have just finished my second round...and I'm ready to through in the towel. The side affects of the steroids are at this point almost not worth doing. They are trying to prevent a relapse since I am not on any MS therapy.

My neuro would like to see me on Tysabri but I would prefer it to be on the market longer with more studies as to why some get that brain infection (one in one thousand). What I am doing is trying to buy time. I have agreed that if things become worse then I will do it. I have only been under the care of a competent doctor for six months. I know the MS is out of control and I know it is a gamble to wait. I guess my answer to you is...fear...plain and simple.

s as part of JCV/PML detection protocol. I am having a blood test, brain MRI and an LP every 6 months as part of my Tysabri treatment. This article from the Journal of Neurology discusses this protocol. http://www.msrcny.org/sites/default/files/articles/JCVpaper.

It seems very unusual for people to be prescribed Tysabri right off the bat. I am very confused as to what drug to go on, if any. His first choice for me is Tysabri, followed by Gilenya, followed by Copoxone. I have a Naturopath (who actually has MS) who is vehemently against all of the drugs and questions their efficacy. The neurologist says it's my decision but I feel completely unqualified to make such an important decision.

There may be a Washout period between Tysabri and Gilenya before he begins this new drug. A recent study showed that people who go off Tysabri will most probably experience a serious relapse in their MS.

The article also says that the patient was started on Gilenya after only being off Tysabri for 6 weeks, when the recommended washout period is actually 12 weeks. There are still alot more questions than answers about this situation - hopefully more specific information will continue to become available, so it can all be put into better perspective. And hopefully this will prove to be an isolated case ... time will tell.

Tysabri taken off market

Common Questions and Answers about Tysabri taken off market

tysabri