Tysabri pml october 2010

Common Questions and Answers about Tysabri pml october 2010

tysabri

1115136 tn?1258778476 However, we have some good evidence that the TOUCH surveillance program is learning to pick out at least some of the people who may be at higher risk for PML, stopping the Tysabri and trying preemptive measures to get the Tysabri out of the system. Okay then. What is the worst thing that could happen if you don't do anything - except steroids - and what is the risk that it would happen?
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.
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.
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.
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.
294425 tn?1288528395 ” The patient, who was admitted to the hospital on October 24, underwent plasmapheresis to remove Tysabri from their system and was released from the hospital on October 28. The patient is currently under the care of the treating physician." No update yet on how she is doing. I had heard about a case of possible PML here in the US, last week, so I am assuming it is the same woman. Her husband posted about it on a site I found with people on Tysabri.
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.
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.
147426 tn?1317265632 Quix - I have wondered how someone without JCV acquired it. Is it airborne etc. Before starting Tysabri I tested JCV -. After 20 infusions I tested JCV +. Now I wonder if I had it earlier, at undetectable levels. It's a moot point for me, as at the same time it was determined that Tysabri was no longer working for me (fetuin-A CSF level). No point in risking PML if the Tysabri isn't working :-) I've moved on to rituximab.
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.
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.
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.
1831849 tn?1383228392 My clinical exam was good and my brain MRI was free from evidence of PML and free from any new lesion activity. I have been having some issues with my left leg lately, beyond my 45 minute exercise wall. My left leg can sometimes have a mind of its own. If I walk down a hallway and turn right it wants to keep going straight, He seems to think that there may be some activity in my c/t-spine. He also thinks I will benefit from some PT.
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.
1088527 tn?1425313375 Hi Kat - I will get my 11th infusion in about 10 days. I have had no issues of any kind in conjunction with Tysabri. From the follow up MRI's I've had Tysabri seems to be doing the trick. No new lesions or relapses since I started. You will be tested for the JC virus prior to starting.
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.
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.
Avatar f tn s setting up blood work for all the oral meds. My question is what is the PML risk for this one. I know its lower then Tysabri but how or do they even monitor you for it? Also, what kind of side effects or experience have you had? Thank You.