Tysabri jc

Common Questions and Answers about Tysabri jc

tysabri

572651 tn?1530999357 The screening test for the JC Virus for patients considering Tysabri as their tretment was officially approved by the FDA today. 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.
294425 tn?1288528395 I got the official JC virus results, and I am JC positive. We are still staying with the Tysabri at this point, since we feel it is helping me.
739070 tn?1338603402 This was an interesting report - it was also reported via MedLine in perhaps an easier format to understand ---- http://www.nlm.nih.gov/medlineplus/news/fullstory_125250.
Avatar f tn Friday I called my neuro to find out if they want me to do a washout period on Tysabri, as they are considering me for the new drug out in March. I've ben on Tysabri almost a year and JC+ from the start The nurse told me my test showed 1.03. which means nothing to me. Anyone know anything about this test?
Avatar n tn The FDA has just recommended that people on Tysabri who are JC negative should be re- tested every 6 months, since it is a common virus that you can be exposed to at any time. So I would definitely keep up on that if you stay on Tysabri. Were you on any kind of treatment prior to Tysabri? 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?
Avatar m tn In the time I have been taking Tysabri, they have obtained much more data, as more and more people began taking Tysabri and staying on it longer. The JC virus test has been very helpful, allowing people who are negative to go on Tysabri with much less worry of PML, as well as giving people who test positive a better idea of the risks and allowing them to make more informed choices and decisions. At this time, they have identified 3 main risk factors for PML while on Tysabri: 1.
1950519 tn?1324518193 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???
1638868 tn?1309542428 i have read up on tysabri and i dont like when i have read,they drew blood today to check for the jc virus.
Avatar f tn HOWEVER if you continue to test negative for the JC Virus there is no reason you should have to stop tysabri if it is working for you. In fact, stopping Tysabri is shown to cause serious relapses and is not something fun to go through. I would talke to a different doctor about tysabri and get off the holiday idea. Of course if you test positive for the JC virus, that is a different story entirely. good luck in working this through with your medical provider.
1831849 tn?1383228392 I had my 5th Tysabri improvement last Sunday. Since then I have noticed a major improvement in the way my legs feel and work. I mean a major improvement. My legs have not felt this good in a very long time. I have also been exercising regularly for the last month and have lost a bunch of weight. I'm trying to determine to what I can attribute the improvement. Is it the Ty infusion? The exercise? the weight loss? I'm kinda hoping it's the Tysabri.
1827617 tn?1317703371 I just got the results of my JC virus test, and I am JC positive. Even so, both my neuro and I feel I would be doing alot worse if I wasn't on Tysabri, so at this point I am staying on it. It has not always been an easy ride, but we still feel it is the best thing for me at this point. I have to go get ready to head out, but will be happy to answer any questions you may have. Feel free to PM me if you'd like.
645390 tn?1338555377 She told me I was negative for the JC virus and would like to know my thoughts about this. Would I be willing to try Tysabri? She knows I was overloaded with info at the last visit and wants to go over all this. She said she has done lots of "thinking" about what med would be most effective for me. I appreciate her doing her job so well. I have total trust in her, but am really nervous about this med.
Avatar f tn I was on beta seron for months.. Now starting tysabri.. No I don't carry jc virus. Anyone have input on this? My lesions are in brain and cervical spine is a mess with lesions. Arms n hands are awful. Have had the hugs as well. And the almighty "zapper", the elect current that runs through torso and hits you in the pelvic area. This disease is quite difficult to keep up with. Here then there then another area...
572651 tn?1530999357 My Neurologist is not a big fan however. She will suggest almost anything before discussing Tysabri, but now with the JC virus test, she seems to be warming up to the drug. I am going to put it off for a while and think about it. Luckily I haven't had any immuno-suppressant treatments so getting a negative JC test would certainly make me a good candidate for Tysabri. I just want to give IVIG a bit more time.
1088527 tn?1425313375 Ren had a port put in, but for some reason I am thinking they may have taken it out. Hope she sees this and chimes in. There is no connection between steroids and PML, as Kyle has already said. The JC virus is the one concern for this. My infusion nurses normally get it the first time, and I am a very hard stick, too. My veins roll and blow - my 8th infusion is next Tuesday.
Avatar m tn Does anybody have any experience with Tysabri? I just tested positive for the JC virus and my doc still wants to put me on it for 6 months. He says that the risk of getting the brain infection is very low since I will only be on it for a short period of time. My other option is to go on Gilenya, I am not sure what to do.
Avatar f tn There are several of us here on Tysabri - I made the switch after about three years on copaxone. It takes a day a month to stop and have the infusion, and then I go on ny way for another 4 weeks. So far, even though some of my symptoms continue to progress. my MRIs are stable with nothing new that would excite me or my neuro. I am also JC negative, hitting my two year mark, and plan to stay on it until I have to stop.
382218 tn?1341181487 I've been on Tysabri for 28 months and continue to test negative for the JC Virus, so it is a no-brainer for me. They screen for JC and liver function every six months but would do it more if I reguest. Kat mentions what I like best - besides that it is working for me - is this is just one day a month that I set aside to do my infusion and then I don't think about it again for another 27 days. I don't have that constant reminder with daily injections that I am sickl.
233622 tn?1279334905 I'm just curious - what kind of study are you involved in? I'm on Tysabri too... just had blood drawn for the JC virus antibody study. Is that the one you are talking about?
1831849 tn?1383228392 So, is it that 4 of the 10 were JC antibody negative, BUT, had JC viral in their blood? If so, wonder how the ab test doesn't catch this... Guess this extra knowledge requires a degree in immunology, lol I wonder further how frequent it is that people test positive for certain virus in blood but ab negative. Again, I'm on a big learning curve here. So, if my thinking out loud if off because I'm misinterpreting the facts I apologize.
2047903 tn?1330187549 I'm signed up to start Tysabri in the next couple weeks. My doctor really recommended it as he thinks it would be a good option for me. It's just kind of difficult for me to wrap my mind around because it seems like it's used more as a last resort rather than a first line of defense. This will be my first DMD, and I'm a little nervous. Is anyone else using this as a first DMD? What kind of side effects can I expect?
1337734 tn?1336234591 Here is what my neuro had to say about that, as many of you told me, many people who are JC+ take Tysabri. He explained that the TOUCH program allows them to monitor patients making it much safer. He did however tell me that I would be allowed to stay on Tysabri for only a year at best. Then he told me that although people feel great on it, as soon as they stop taking it they "crash and burn", meaning they feel terrible and begin having many relapses. Well that sure turned me off!
147426 tn?1317265632 The equivocation comes from the occasional false negative of the JC blood test, so that the very rare person with PML and a negative result on the JC virus mostly likely actually has the virus which was not detected. There was some thinking that a Tysabri vacation could help prevent PML. I have not seen this evidence. Now - what I am about to talk about is not published and no one should act on it, but it is very interesting.