Tysabri blog ms

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tysabri

572651 tn?1530999357 Hi, Chris. Thanks for sharing your blog that helps us understand the financial upside of Lemtrada being approved. I have also blogged about this company and this drug, neither of which I like much, but bottom line is people with aggressive forms of MS should be given this drug as an option. The latest this week is the drug's lead investigators are planning to file their own appeal of the decision.
1831849 tn?1383228392 It involves only one patient so far, and that patient is still alive. Despite ahving not used tysabri, they had used an interferon just before Gilenya, and steroids both before and during the Gilenya treatme t. Worth keeping an eye on this story, for sure.
294425 tn?1288528395 Here is a link to the blog I found where Tysabri users weigh in, if you haven't found it yourself, or found something better. http://blog.healthtalk.com/multiple-sclerosis/life-with-ms/tysabri-a-progress-check/ I'll be checking in, take care, my friend.
216354 tn?1262871346 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. We haven't seen much improvement with tysabri, but at least she hasn't had anymore attacks while on it. Can anyone shed more light on this for me? I was hoping to gather more information on this if anyone has it. Please let me know! Thanks!
Avatar f tn I'm not on Tysabri, but want to bump this up so that your message doesn't get lost. My sister is on Tysabri, which she's been on for two years now. Her MS is not behaving like someone that has RRMS, as her MS is more like a train that keeps barreling down the tracks and is unable to be stopped. She was on Rebif for a year and she experienced a sharp decline over the course of the year. She started Tysabri, and her disease has slowed, but it's by no means stable.
Avatar n tn However, I will try to provide you with some information regarding rituximab in MS. I will say though that as you know, the goal of therapies for MS is to prevent relapses and accumulation of lesions in the brain and spine. While being off medications for a few weeks or even months is probably not detrimental, in the long term, it is optimal for patients who can tolerate the side effects of MS medications to be on them.
1831849 tn?1383228392 The research side of my MS Practice has identified a CSF biomarker for disease activity. The research is featured on the cover of this month's Multiple Sclerosis Journal. http://tischms.org/news/tisch-ms-breakthrough-biomarker-research-featured-cover-article-october-2013-issue-multiple I'm a beneficiary of this discovery. I had been on Tysabri for 20 months. At 18 Months I converted to JCV +, and we discussed switching from Tysabri to Tecfidera.
Avatar f tn MS is different for each of us, but if you are familiar with the 5 stages of death, MS runs along the same parallel, but we can go in and out of them and not in any particular order. Denial is my favorite when I am feeling good and have been good for awhile. My latest neuro thinks I've had MS since 1981 (no MRI then) and I went thru 3-4 before finding this one, 3 states away, and won't give him up for anything.
Avatar f tn I do not have typical ms, but a variant that is still clinically not diagnosed. I have a great neuro @ Stanford & he is recommending I start on Tysabri ASAP. I read up about the JC virus, and regardless plan to begin treatment next week. I don't know anyone with ms or ms variants so I want to know more about Tysabri from people who are on it or have used it. What is your experience? Pros/cons? I have read about side effects but I want to hear your thoughts & how it made you feel.
5681139 tn?1372268736 He reiterated that point yesterday. There are pluses and minuses to all MS meds. For me a big Tysabri plus is that I only have to deal with it once every 4 weeks. The thought of daily or weekly self injections was not all that appealing to me. Right before I saw my neuro yesterday I saw my naturopathic doc. Her office is two doors down from his, in the same MS practice. They work together and each is aware of what is being discussed with the other.
Avatar f tn I hope you will take the time when you feel up to it and post some details about your MS and treatment with Tysabri. It could be helpful to others. Again, welcome!
Avatar f tn Recently diagnosed with MS (November) and they are starting me with the drug Tysabri. Trying to find out what to expect and if it is helping others with their symptoms? All new to this, really have no idea what I need to know or ask? Just looking for someone with some insight on what I will experience.
5993128 tn?1384747803 Hi BL- Welcome to Our Merry Band :-) I was diagnosed 2 years ago, at age 51, with SPMS. My first, and up until a week ago my only, DMD was Tysabri. When I was diagnosed we were able to connect seemingly random events over the previous 20 years. What seemed completely unrelated was related. All were symptoms of MS. Because I'd had MS for so long my doc thought I was out of reach of the injectables. At the time the orals were just starting to come on the market.
1760800 tn?1406753451 While having a couple of steroid infusions I got talking with a few Tysabri regulars who see each other every month. One woman told me she had been an MS mess before Ty, and after starting the drug she had had absolutely no more MS problems. Lots of people here would say the same. The only issue is whether you are JC negative, which I presume you are. You go, girl!
Avatar n tn darn iphone, it thinks it can spell what I really said was........I've had SOME ups and DOWNS that were BLAIMED on Tysabri but now considered to be caused by MS in general!
1475492 tn?1332884167 Someone said that Jose who died from PML were taking more than one MS medication. Is that more than one DMD or treatment for symptoms?
Avatar f tn Hi. I'm new to MS and Tysabri. I was just diagnosed in July of this year. I basically had no symptoms. Maybe a little fatigue and dizziness but it was always "explainable". I wouldn't even have gone to the doctor then if it weren't for numbness/tingling in my hands. I work on a computer all day so it was very annoying and I broke down and went. And after a few MRIs and other tests this is where I am.
3057400 tn?1340439349 I M SUFFERING FROM MS SINCE 1998. OF LATE MY CONDITION HAS WORSENED i.e. LOWER LIMBS ALMOST STOPPED WORKING, STIFFNESS IN BODY AND URINE N STOOL CONTROL FINISHED. I M TAKING AVONEX ONCE A WEEK. THIS SITUATION IS SINCE 10 JUN 2012. I HAVE BEEN ADVISED TYSABR. S IT OK? PLEASE HELP ME REGAIN SOME OF MY STRENGTH.
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.