Tysabri side effects pml

Common Questions and Answers about Tysabri side effects pml

tysabri

Avatar f tn I am glad to hear that other people are researching Tysabri and not just shying away from the drug due to the possible side effects. All medications have terrible side effects and if we read about every medication we took....then we probably would not take anything. I believe the Tysabri has started to give me my life back and I pray that the longer I take it - the better things will get. Someone had asked about UTI's.
1637739 tn?1371688706 I too have young children, and I do worry about the side effects of Tysabri. However, I decided I am more worried about my mobility worsening day by day, and I am hopeful the Tysabri helps. Good luck to you, and I would really ask your neuro why he wants to start with Tysabri being your 1st med, besides research. I would really expect a better answer than research.
Avatar f tn Next month will be my 8th infusion. It does take about 6 months to get the full effects of Tysabri. I was very concerned about PML & have followed it much. The earliest PML happened was at 8 months for a person using it for Crohns, before it was pulled from the market in 2005. The latest case was after 26 infusions in 2008. I thought I will just start it & not worry about it until I get to that 8 month and decide then.
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.
470613 tn?1207312671 The cardiotoxicity of Novantrone is scary to me, not that Tysabri is without its serious side effects, as you point out. You are definitely not being silly to have such concerns. For now I am holding steady since going on Copaxone three months ago. Prior to that I had a short and unsuccessful run at Rebif. Had to discontinue Rebif after only 8 weeks due to elevated liver enzymes. Since you only started Copaxone 6 weeks ago, it really hasn't had a chance to do its thing.
1088527 tn?1425313375 went to neuro this morning she doesnt like the welts i have from the rebif so we are going to stop that plus the other side effects are bothering me as well. so we discussed copaxone and I am not thrilled at daily injections so we then discussed tysabri and feel that may be a good fit.
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.
1831849 tn?1383228392 The kickback on leaving that therapy has been shown to have wicked relapse side effects. You could remain on Tysabri and be monitored every couple months for PML but that gets to be cumbersome. I want to go to your MS Day Spa - it is great to have everything under one roof.
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.
Avatar m tn My neurologist tested me for JCV and I was positive. She said I could still do Tysabri for a couple of years. I declined. Then she wanted me to do Tecfidera. 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.
1168718 tn?1464983535 Hi Candy! I've been on Tysabri for almost 2 years now and I am really happy with it. I was afraid of the possible side effects too, but so far I haven't had any. I make sure I get tested for JCV regularly and feel like it really helps me. I haven't had a serious relapse since I've been on it and I've been through enough stressful situations that it could have easily brought one on.
1831849 tn?1383228392 Just curios why would anyone use a medication with this possible side effect? I was diagnosed with PPMS in 2008... I am treated at Beth Israel Hospital in Boston, MA by a top MS specialist.
1950519 tn?1324518193 Mitoxantrone is an aggressive treatment which slows the progression of SPMS, and increases time between relapses in RRMS and PRMS. It can be very effective but also has some serious side effects, most notably cardiotoxicity.
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.
1831849 tn?1383228392 Glad to hear that things are going so well for you with the Tysabri, and that you are even noticing improvements! It hasn't always been an easy ride for me, but overall, Tysabri has definitely been a good thing. It certainly slowed down the parade of symptoms I was having before I started it. I go for #45 in a couple of weeks. I can't remember - were you negative for the JC virus?
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 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.
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 I tell the doctor if I have side effects and they give me meds to help. Same with MS there are meds to help. PML is one to give you pause but it is only a few drugs can cause it. I have known people on Tysabri for years with no issues. Many doctors pull you off or take breaks to reduce the risk. If you have side effects that are too much you can switch drugs. Like diabetes or cancer you have to take some serious drugs but the disease are serious. But luckily MS is not fatal.
Avatar f tn m about to start Tysabri. I know there are some risks, side effects etc, but I trust my new Guru.
1168718 tn?1464983535 So, I go into the office with what I want to try, and why, and I understand the side effects and PML too. Any suggestions that I could take with me to my appt. would be appreciated. Thanks, Candy Cheers !!!