tysabri trials

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.

The Biogen Idec lunch talk I went to today was very interesting and quite a different approach than the usual tons of slides about Tysabri. It focused on what those numbers in clinical trials really mean. Of course it was directed at explaining why the Avonex number and Tysabri numbers are what they appear to be, but it really got me thinking.

Hiya.. :) Thanks for your kind words and support, but I know I'm not the only one here on Tysabri....lbradley35 has been on it longer than me, and with an improved MRI for the first time ever! (Go Lori!!). I know there are maybe another 3 or 4 others here too, I'm not sure. And we have several people here involved in clinical trials, which is also a major leap of faith...

I had been on Tysabri for 22 month's and just recently stopped. I was wondering if any new info. is out there on the drug Rituxan for MS? I have SPMS with RRMS. I was in a study 3 yrs. ago at UCSF and did really well on Rituxan. However, Rituxan is not an approved drug for MS and at that time my insurance would not cover it so I had to discontinue taking it. Or should I just take a break for awhile and not take any ms med"s?

I would like some information/details from anyone who has had (or seen) the rash you can get from Tysabril and/or PML?? I have been on Tysabri 10 years so far without any major issues. I was outside after my treatment for 10 minutes or so. After taking my shirt off, my husband gasped and asked what was wrong with my back.

Many (their exact numbers are unknown due to the fact these are blinded studies) have been treated at one of the three FDA-, IRB-approved trials currently in phase II trials in the U.S. and a phase III trial underway in Poland. And more are scheduled. The Saskatchewan provincial government is spending $2 million for 80 to 90 MS patients to travel to Albany, N.Y., for CCSVI treatment after efforts to get an in-province treatment trial running by year-end failed.

And even if Tecfidera ultimately was directly connected to PML, know that Tysabri is too, and yet the vast majority of patients use it safely every month. It's something to be aware of, but no reason to throw out the Tecfidera yet. http://www.foxbusiness.

Thanks. I will do that. I saw three neurosurgeons about more minor versions of these and other symptoms in the months before I finally figured out myself that I probably had MS which this neurologist confirmed. He is generally very responsive....enough so that he switched me from Avonex to Tysabri after 18 months and rounds of steroids.

Only Tysabri has shown the abilty to cut relapses and lesions by 2/3s. Tysabri is relatively new and is still has some issues. In fact no one knows what it does after 2 years. The more std. MS drugs, which are primarily interferons by the names of Avonex, Rebif and Betaseron cut MS activity by about 1/3. And thats if you have Relapsing Remitting MS. The drugs are all injected. A new drug that is oral "finglomod" is in phase 3 clinical trials.

Thanks Ren! I have researched the heck out of this drug since before it was approved. Ive done Copaxone, Gilenya, and currently Tysabri, and nothing works. I'm on discussion boards of people who were in the trials and ones who have done it since Dec. and the results have been amazing so far. There have only been a couple who posted that were less than thrilled, mostly due to side effects or not seeing any changes yet, but 98% of the posters have nothing but positives so far.

t prescribed as first-line treatments. Some oral medications, such as Fingolimod and BG00012 are in clinical trials right now. That would be the only way of getting them right now. If you're interested in that, you could do a web search to see where the different oral meds are being trialled. I'm about your size and weight, and I am using Copaxone (which isn't an interferon).

Wondering if anyone was part of the BG12 drug trials and if so, could you share anecdotal stories about the side effects? I read one story where the gastrointestinal problems last for the first few months. I work full time and cannot deal with a month or more of diarrhea and stomach cramps. I'm also concerned with the suppressed immune system and the possible liver problems. Injecting Copaxone daily isn't fun, but I don't have to deal with stuff like that.

Hi Bruno - Is your Doc talking about getting you into the trial? My worry about trials is that if they are properly set up, I might get a placebo, rather than the drug. We all respond differently to different drugs. For me, I was on Tysabri, but after a year and a hals it stopped working. Since I've been on rituximab I am not any better, but I have not gotten any worse. The goal of these drugs is to keep you from getting worse. THey aren't really designed to make you better.

The injections only work 33% if started at the beginning stages of Relapsing Remitting MS. There is Tysabri an infusion and their are drug trials for oral medications. Sometimes they can even use chemo but it is rough stuff. Unfortunately to date these are the only proven treatments. Some people go to other countries to get stem cells. The problem is stem cells can't repair damage they can only in some cases slow future damage but usually only for awhile.

Here is what my neuro had to say about that, as many of you told me, many people who are JC+ take Tysabri. He explained that the TOUCH program allows them to monitor patients making it much safer. He did however tell me that I would be allowed to stay on Tysabri for only a year at best. Then he told me that although people feel great on it, as soon as they stop taking it they "crash and burn", meaning they feel terrible and begin having many relapses. Well that sure turned me off!

As of March 2008, more than 26,000 patients were on Tysabri® worldwide. Since the re-launch of Tysabri in July 2006, no new cases of progressive multifocal leukoencephalopathy (PML) have been reported. PML is an often-fatal viral infection of the brain. Data from the PLEX study suggest that plasma exchange may be an effective procedure for accelerating the removal of Tysabri from the blood if PML infection is suspected.

in the seven parts of this video, Dr [Alasdair] Coles gives an overview on four current or emerging therapies for persons with multiple sclerosis (MS). These are Tysabri, Cladribine, Fingolimod and Alemtuzumab." http://www.mssociety.org.uk/support_and_services/audio_and_video/video/awareness_talks/current_and_emerging_therapies/current_and_emer.

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. I did alot of research before I decided to start the medication and the one resource that helped me make my decision was reading the Tysabri diaries on line. www.msrc.co.uk/index.cfm?

Common Questions and Answers about Tysabri trials

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