Tysabri pml ms

Common Questions and Answers about Tysabri pml ms

tysabri

216354 tn?1262871346 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!
4848471 tn?1372238752 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.
Avatar m tn Hi DH - Welcome to our group. I am currently getting Rituxan (rituxmab) and before this I was on Tysabri. They are the only two DMDs I've been on. I have had good experience with both meds. Tysabri lasted about 20 infusions before it stopped working. The Rituxan seems to be doing the job now. I started Rituxan in November of last year and finished my second round yesterday. I had no adverse reaction of any kind to either med.
Avatar f tn 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?
Avatar f tn Plasmorephis, blood filtering is already standard treatment to get Tysabri out of the body quickly if PML happens. 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.
738075 tn?1330575844 • Although the absolute risk for PML in patients treated with Tysabri cannot be precisely determined, the U.S. FDA and the company have released data suggesting that the risk increases with increasing time on therapy. • The company changed the label of Tysabri to indicate that the risk of PML is increased in patients who have been treated with an immunosuppressant (such as mitoxantrone, and less commonly, azathioprine and methotrexate) prior to receiving Tysabri.
572651 tn?1530999357 But the neuro also talked about Natiluzamab (tysabri) and the PML problems associated with it. The take aways were: PML occurs with other drugs/diseases too, but doesn't occur spontaneously. People with JC Virus negatives NEVER develop PML according to the stats. Most interesting to me was the idea that that European incidence rate of PML is hypothesized to be significantly greater because of the cost constraints of health care.
1637739 tn?1371688706 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.
1760800 tn?1406753451 The risk associated with being JCV + and getting Tysabri is PML. PML is a rather nasty little brain infection. In addition to monitoring my blood for JCV, my doc also used MRI to watch for signs of PML. 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.
572651 tn?1530999357 The test tells if the person has been exposed to the JC Virus or not. PML on tysabri has only occured in people who are JC positive. There has not been a single case of PML in JC negative people. You can read the release here- http://www.medpagetoday.
Avatar n tn Use of other immunosuppressants before Tysabri are a risk factor for PML, but this does not refer to the standard first line DMDs. Have you had any side effects in your time on Tysabri? It's great that your MRIs are stable! Have you talked to your neuro about remaining on Tysabri? Everybody is different, so there are a lot of factors that play into a decision to remain on it or stop. there is also the possibility of rebounding when stopping Tysabri that should be taken into account.
1115136 tn?1258778476 Before Tysabri, she was taking Rebif, and her MRI was showing advance in lesions. I think Tysabri has helped to slow down her MS, and if you ask my sister whether or not Tysabri has made a difference, she would most certainly say it had. For those of us with MS that have a more aggressive disease course, it's nice to still have an option available for us.
Avatar m tn 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 +. She said my disease is very active, which I'm well aware of -- I'm living in this body, not her.
1950519 tn?1324518193 being on Tysabri longer than 24 months, being JC virus postive, and prior immunosuppressant treatment. Even though I have 2 out of the 3 risk factors (I have no prior immunosupressant usage), we are still sticking with Tysabri at this point. He watches me very closely, and I get MRI's every 6 months. Like LuLu mentioned, Gilenya is the newest alternative treatment to hit the market. It is an oral med, but it also has it's own risks.
294425 tn?1288528395 Plus, at that time, the thinking was that PML was linked to Tysabri being used in conjunction with other MS treatments, especially interferon. And for 2 years, that seemed to be the case, and everyone was just starting to breathe a sigh of relief... :) Novantrone scares me more, too. The cardiac toxicity is a major thing, and my neuro doesnt like to use it for that reason. But there are people who have used it and said it helped.
Avatar f tn As of now there have been two additional cases of PML an often fatal viral brain infection in Europe in two people who had been taking Tysabri for 14 months and for 17 months. So, currently the infection rate is 2 people per 6000 taking it. This is less than the "label warning" of 1 per 1000, but it really does dash the hope that the prior cases occurred because of the simultaneous use of other immune-modulating drugs. Phooey.
1458012 tn?1285582530 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?
294425 tn?1288528395 I was making such a steady decline and Copaxone did not seem to be helping. I could not take the interferons for medical reasons so my MS neuro suggested Tysabri. He has used it since it first came on the market and said out of the 88 patients he has treated personally, only one person had problems. That patient was given plasmapherisis and the neuro side effects stopped. I go to a different MS Center for my Tysabri infusions where they have a TOUCH program in place.
923105 tn?1341827649 The arguments you gave to me are not to be considered, as their are not true. the risk to develop PML with tysabri is 1/10000, not the risk you wrote, for example. So, your decisions concerning yourself do not meet my ethics. I do respect your decision, but I consider that my work does not consist to wait peacefully for the development of handicap of a patient. Yours decisions in the past (to stop copaxone) and now (not to treat you with the most efficient drug) are not reasonable.
294425 tn?1288528395 Novartis (the maker of Gilenya) at this point is attributing the PML to the prior Tysabri usage, but they acknowlege "that the contribution of Gilenya to this case can not be excluded." I figured I'd post this just as a heads up ... not trying to freak anyone out, just something to be aware of and keep an eye on. It will be interesting to see if this will be an isolated incident, or if there will be more cases to follow.