tysabri with pml

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. Being positive for the JC virus 2. Being on Tysabri longer than 24 months 3.

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.

• 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.

I was offered Gilenya when I had problems with Tysabri (which turned out to be something other than Tysabri that caused it) and after reading the cardiac warnings and other side effects, chose not to take it. Tysabri has a wonderful financial support program. They fully donated my first 4 months of Tysabri until I could get an insurance program in place. Tysabri is considered an "outpatient" procedure and under my insurance, is paid for now at 100%.

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.

Results As of February 29, 2012, there were 212 confirmed cases of PML among 99,571 patients treated with natalizumab (2.1 cases per 1000 patients). All 54 patients with PML for whom samples were available before the diagnosis were positive for anti–JC virus antibodies. When the risk of PML was stratified according to three risk factors, the risk of PML was lowest among the patients who were negative for anti–JC virus antibodies, with the incidence estimated to be 0.

My mom has battled MS for over 20 years now and is now wheelchair bound. She has been on every medication available with little results, and has now been on tysabri for almost two years. 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.

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?

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.

com/newspaper/finance/2012/0414/1224314729546.html. It seems there is now a case of PML with a Gilenya patient. This person was previously on Tysabri for 3 years, and was JC positive. There is no information yet as to how long of a wash out period they had before starting Gilenya, how long they were on Gilenya before getting PML, what kind of symptoms they were experiencing, or any info yet about the condition of the patient.

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.

There are other significant risk factors with Tysabri, aside from PML, so that would probably play into your decision, too. Keep us posted on how you do, and feel free to ask any questions - there are several people here who use tysabri and could share their experience and knowledge.

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.

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.

Good update Kyle. Glad your brain is PML free. Hope your CSF is JCV free too. Good luck with the MRI. Glad there are more DMD options available to you. Kinda cool how we RRMSers, SPMSers, etc. can have entire conversations in abbreviation and totally understand what we mean.

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.

I know a few people here that are on it so any feed back will be great I am nervous about it because of the PML but because I havent been treated with steroids in the past that I dont think I have to much to worry about, I am nervous about the IV I am a very hard stick to begin with usually multiple misses before they get a vein even for a blood draw has anyone had a port a cath put in for their infusions? if so how was the procedure and how are the infusion?

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.

) We are hoping to have a source with more info, so that it can be easily referenced by anyone seeking insight into Tysabri. Here's some things we thought would be helpful for others to know: When dx'd? Other treatments prior to Tysabri? How long were you on them? How long have you been on Tysabri? Do you feel it is helping? Have you had any side effects? If you were on Tysabri, did you have to stop the treatment for any reason? If so, why?

Good luck with Tysabri! I'm taking my 11th infusion on Wednesday. The good news, I haven't had any new flairs since I've been on it. I'm taking a "holiday" from Tysabri after this infusion. My neuro says a periodic holiday keeps the incidence of PML lower. I haven't had my JC virus antibody tested. Is this a blood test, or a urine test?

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.

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.

Tysabri with pml

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