tysabri for ms

The research side of my MS Practice has identified a CSF biomarker for disease activity. The research is featured on the cover of this month's Multiple Sclerosis Journal. http://tischms.org/news/tisch-ms-breakthrough-biomarker-research-featured-cover-article-october-2013-issue-multiple I'm a beneficiary of this discovery. I had been on Tysabri for 20 months. At 18 Months I converted to JCV +, and we discussed switching from Tysabri to Tecfidera.

I just saw a MS neuro at OSU hospital. He asked me whether I was interested in being in the Tysabri study. I am only 37 and have only had one relapse. I know I will be deciding on a treatment and not sure what direction to go. This neuro is big in research and he spent a lot of time talking with me about MS. He mentioned a JC Virus and took my blood to look for it. If I don't, I would be a good candidate for Tysabri. It has 67% reduction in relapses but also risks getting PML.

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.

This release last week announced that Tysabri is now in Phase 3 studies for use in treating SPMS. That has to be good news for anyone following the ASCEND trial. You can read the details at - http://www.biogenidec.com/PRESS_RELEASE_DETAILS.aspx?ID=5981&ReqId=1653040#.TyFoJl4mTgY.

Aww, Michelle! I'm so sorry Ty isn't doing it for you. I'm hanging in there for when BG 12 comes out as well. It sounds promising. I used to loose my voice during flares, and the muscles around my larynx would be sore and tired any time I tried to use my voice for singing or talking. I feel for you!

However, she was also told that if she were to stop tysabri she was pretty much guaranteed to have an attack of the MS. She has an agressive form of MS and other medications don't seem to work. We haven't seen much improvement with tysabri, but at least she hasn't had anymore attacks while on it. Can anyone shed more light on this for me? I was hoping to gather more information on this if anyone has it. Please let me know! Thanks!

My lesions were increasing and I still had the fatigue that went along with MS. Ive been on Tysabri for almost 4 years with no flare ups. For having MS, I feel great. I used to get monthly blood work to check for PML and would take 2 to 3 month "holidays", just so my body wouldn't be over exposed to the Tysabri. (It lasts in your system for up to 3 months). I recommend Tysabri to anyone that has MS. It beats daily self injections, and its only once a month.

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor. Without the ability to obtain a history from you and examine you, I can not make recommendations regarding treatment with rituximab or any other medication.

MS is different for each of us, but if you are familiar with the 5 stages of death, MS runs along the same parallel, but we can go in and out of them and not in any particular order. Denial is my favorite when I am feeling good and have been good for awhile. My latest neuro thinks I've had MS since 1981 (no MRI then) and I went thru 3-4 before finding this one, 3 states away, and won't give him up for anything.

t give you the most bang for your buck - my copay for Avonex for 3 months was something like $60. My Tysabri cost, after Medicare and United Health Care AND getting Tysabri assistance for the drug (I could get it for $10) ended up being over $600 PER INFUSION. I asked and asked and asked what the charge would be before I started - and they said after insurance probably $50-60. They would NOT give me a number. They didn't bill me for the first infusion until I had gotten 3.

I hope you will take the time when you feel up to it and post some details about your MS and treatment with Tysabri. It could be helpful to others. Again, welcome!

The Peripheral and Central Nervous System Drugs Advisory Committee has recommended that the FDA approve alemtuzumab for the treatment of MS. As with any of our favorite concoctions there are serious risks, but the reduction in relapse rate seems to outweigh them. http://www.medpagetoday.com/Neurology/MultipleSclerosis/42899?

I have to call tysabri help line to get that straight I will certainly be looking more at tysabri myself. I will post my reasoning for choosing to go with it in a new thread hopefully tomorrow.

I was on Tysabri. For 20 months. During that time I saw no significant advancement on my MS. I also has absolutely no side effects. I stopped for 2 reasons; I converted to JCV+ and the drug stopped working. It's important to recognize that Tysabri and other DMDs are nt meant to treat sysmptoms. You are not likely to see siginifcant symtom reflief fromTysabri. It is meant to keep your MS from progressing.

Hi BL- Welcome to Our Merry Band :-) I was diagnosed 2 years ago, at age 51, with SPMS. My first, and up until a week ago my only, DMD was Tysabri. When I was diagnosed we were able to connect seemingly random events over the previous 20 years. What seemed completely unrelated was related. All were symptoms of MS. Because I'd had MS for so long my doc thought I was out of reach of the injectables. At the time the orals were just starting to come on the market.

My MS dod not advance, nor did I have any relapses while on Tysabri. I stopped for 2 reasons. The first was that after initially being JCV -, I converted to JCV +. At the same time my doc was able to determine that Tysabri was no loger working. (He has developed a test using spinal fluid to determine if Tysabri is working.) If I could, I'd still be on it. Instead I have switched to Rituxan...

With the recent addition of several new treatments, and as I ponder making a change, I'm curious as to how many here are on the various DMDs available. Also interested in those taking something not on the list (eg Novantrone), and whether you have been on more than one DMD and if so, why?

I am 65 been on Tysabri for one year, tell me in my age group how long does most people stay on the drug?

If you choose to go off of Tysabri, there is going to be another washout period. The recommended length for Tysabri to gilenya, is about 4 months. During that time, the recommended protocol is to trreat the patient with routine rounds of steroids until the gilenya can be started. I asked this question recently and the washout to go to the other DMDs can be about 30 days, just not the jump to Gilenya. The Incidence of PML is small, but that is no comfort to those people who contraact it.

Hi. I'm new to MS and Tysabri. I was just diagnosed in July of this year. I basically had no symptoms. Maybe a little fatigue and dizziness but it was always "explainable". I wouldn't even have gone to the doctor then if it weren't for numbness/tingling in my hands. I work on a computer all day so it was very annoying and I broke down and went. And after a few MRIs and other tests this is where I am.

MS doesn't affect joints and would not affect both sides of your body, not usually. Have you been tested for RA? Tysabri is a wonderful drug, I've been on it for 3 years or so, I forget, am JC+ and only problem I had/have is I need a steroid for stomach problems, which goes away after the first week, so basically I take them for a week. I agree with your doctor.

Common Questions and Answers about Tysabri for ms

tysabri