Tysabri news pml 2010

Common Questions and Answers about Tysabri news pml 2010

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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.
572651 tn?1530999357 Very important news about Tysabri. I have to share this news now, even though I am so tired after my second opinion today with a Neuro. Tysabri WILL be withdrawn from the EU market within the next 6 months. Neuro told me that more people have PML than we know, but he would not give me the figures. It was released to Neuros and Dr's alike on Monday - they were told not to give information out to patients!!!!!! People like me who asked!!!
Avatar f tn Just an update on PML, for anyone who is currently considering Tysabri, or who may need to look at it in the future...the original 3 cases of PML were indeed initially considered to be due to the use of Tysabri in conjunction with other treatments for MS, particularly interferon.
Avatar m tn The thought at the time was that if patients took Tysabri alone, PML would not be an issue. Tysabri was re-released to the market, but with strict conditions and monitoring requirements, known as the TOUCH program. Unfortunately, that has not proven to be true. There have since been cases of PML as well as some deaths in patients who were taking only Tysabri at the time. When I started Tysabri in 2008, the estimated risk of PML was 1 in 1000.
572651 tn?1530999357 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.
488198 tn?1493875092 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.
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.
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.
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.
294425 tn?1288528395 I truly feel that as more and more people start to take Tysabri, there will be more and more cases of PML, as well as other serious complications and side effects. It just stands to reason... There's still also the risks for serious liver damage, as well as the FDA now having Tysabri on it's watch list because of melanoma. There have been at least 2 cases of that this year, both after only being on Tysabri a very short time.
216354 tn?1262871346 Last week when she went to the doctor, she was informed that patients who has been on the tysabri infustion for over two years have a greater chance of developing the brain infection PML. I believe she was told the odds went up to 1 in 800. 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.
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.
1638868 tn?1309542428 I tested negative for the JC virus, and was reassured my chances for PML are almost nil. I have met quite a few people on Tysabri, and have heard nothing but good things about it. People seem to do really well and feel good while taking it. Good luck to you and your decisions. For me it wasn't an easy decision. Get lots of information. I had a good friend who is a NP look over the inset given, and she said it seemed fairyl safe to 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.
Avatar f tn I read about this yesterday. While it is not godd to hear that PML is occurring with Tecfidera use, it is good to see that PML is no longer 100% fatal.
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.
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.