tysabri risks

Does anyone have information on Tysabri? I haven't been told much on it, although I have been told by 3 different doctors I should take a look at it. I would like to know what others on it experience or experienced while on it?

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.

My new neuro suggested Tysabri based on increased lesions on Interferon (Rebif). Any persons out there on Tysabri that could share their experience?

I found it interesting that in making the decision to allow Tysabri back on the market, the FDA acknowledged that people with MS should be allowed the decision to take the risks involved. It wasn't that suddenly Tysabri was found to be safer, but that its availability was needed by people with a nasty disease and few options. I will say that the news about melanoma was news to me. My problem with Novantrone is that it does damage to the heart from the getgo.

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.

Repeat testing at three months after the initial positive result is recommended in patients in whom antibodies are detected to confirm that antibodies are persistent. Prescribers should consider the overall benefits and risks of TYSABRI in a patient with persistent antibodies." As to what comes after Tysabri, for me it's RItuxan (rituximab). After 20 infusions Tysabri stopped working. I switched to Rituxan about a year ago and it seems to be doing the job.

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?

Clearly, if I felt that I was headed downhill and there was a chance I could slow it - I would go for the Tysabri - for MYSELF. Each person, though, must weigh the risks and decide for themself. But, becoming educated doesn't just mean trying to sort out the real Tsyabri risk, be it 1 in 1000, 1 in 2000 or 1 in 500. It means also looking at the other side of the equation. I hope this wasn't too heavy-handed.

m about to start Tysabri. I know there are some risks, side effects etc, but I trust my new Guru.

There is an alogirthm for the chances of contracting PML while on tysabri. I believe it is on the tysabri website among other places. I will see if I can find it for you and report back.

Over the last 12 years he has been on all the ABC drugs. Now he is completing the 2 year mark of using Tysabri. Dr Appointment in 2 weeks assume he will stop infusions. I wonder what is next???? How are others doing after all these treatment and now what do they take???

My neuro decided to send me to UCSF to see if Tysabri would work for me. We had a LOOONNNNGGG talk about the risks and the specialist gave me the impression that the risks were MUCH lower than they are. He also gave me the impression that if I tested negative for the JC virus antibodies that my risks were almost nil..

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?

There are arguments for and against each path we might take. There are most certainly risks associated with Tysabri. I was informed of these risks by two MS specialists when they independantly recommended that Tysbari would be the best choice for me. These risks need to be balanced against the opportunity cost of choosing a more moderate approach, like one of the CRABs. I could lower my risk profile by starting with a CRAB, but the cost would be time wasted should that CRAB prove ineffective.

I love the idea of a pill, but I'm scared of the possible risks. Another of the possible risks not mentioned in the article is the cropping up of cancers. Again this was more with the 1.25 mg dose. Tysabri is scary enough...

com/prescribingInfo A lot is out there regarding the risks of PML but most is in regard to people already on Tysabri and then becoming JCV positive, not much actually discussed risk prior and choosing it. All i can surmise is possibly patients and doctors are not choosing Tysabri when they their is a high risk factor..... "For JCV antibody–positive patients with no prior immunosuppressant use, the risk for PML increased with longer natalizumab use.

Hello, I was wondering if I took tysabri with having MS also RSD because with having the rsd it does weakend my immune system, I don't believe this would be a very wise decision do you?

t do a lengthy washout period after stopping tysabri and I understand that patient had also been on tysabri for a longer period of time. How will they ever untangle is it was the Gilenya, the Tysabri or both that opened the door for PML to enter? Argh! Why aren't answers these days just clearly marked? I hate having all these unanswered questions about therapy that is so critical.

She said I could still do Tysabri for a couple of years. I declined. Then she wanted me to do Tecfidera. There have been at least 5 cases of PML in patients treated for psoriasis with Tecfidera (different brand name, same generic drug though). Now there has been a case of PML in the US in an MS patient being treated with Tecfidera. My doctor talks to me like I'm an idiot because I'm just not real excited about doing one of the drugs even though I'm JCV +.

Actually the risks in Tysabri are not as great as people talk about. There still is the risk of some serious infections, and they list 1 death in 1000, but the newer statistics are lower than that. That is not a huge risk and it has to be looked at along side the effects of a disease that relentlessly takes more and more from you. I am sooo pleased for you and your post made my whole evening! YIPPPPPPEEEEEE!!!!!!!!! Lori's brain is BETTER!!!!! This is fabulous!

If you need to switch from Copaxone and you are uncomfortable with the low risks of Gilenya and Tysabri, the others have a good safety profile and side effects that usually can be mitigated.

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?

Rita, you are the leader here when it comes to Tysabri and the risks. Thanks for staying on top of this and sharing what you find out. I know there is a washout period for the CRABS before starting tysabri, but I'll have to look at my papers to see about the washout period afterwards. In the meantime I'll take your word for it - you are a very informed consumer.

Common Questions and Answers about Tysabri risks

tysabri