tysabri journal

My new neuro suggested Tysabri based on increased lesions on Interferon (Rebif). Any persons out there on Tysabri that could share their experience?

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.

I'm sorry you were hit with this, so out of the blue today. I think maybe I know how you feel. My neuro did the same thing at my appt in April, when I was also having trouble with Rebif and he said I should start thinking about Novantrone. I kind of felt like I had been punched in the stomach, and like you, thinking that I had been doing OK all things considered, meanwhile he is concerned about how active my disease course is and talking about aggressive therapy.

I will be having my fourth Tysabri infusion on Monday. I have been keeping a journal ...It is called "Hoping for a Miracle"...lol...At any rate, I had my first infusion a bit too late and landed in the hospital for thirty days. The day I was released I had my second. Now infusion two and three seemed to give me three weeks of great hope.

s as part of JCV/PML detection protocol. I am having a blood test, brain MRI and an LP every 6 months as part of my Tysabri treatment. This article from the Journal of Neurology discusses this protocol. http://www.msrcny.org/sites/default/files/articles/JCVpaper.

Hello, all! I was originally diagnosed with primary progressive multiple sclerosis in May 2007, when I was 26 years old. That diagnosis was changed to progressive relapsing multiple sclerosis in October 2007, when I had an exacerbation. My neurologist has never been completely comfortable with my diagnosis, because I don't display "typical" MS in many ways. My first MRI showed more lesions along my cervical spine than in my brain, but my spinal tap displayed (?

My neuro said that there is a possibility he will do some kinda work up to possibly switch me to tysabri. Here is my question, and as simple as it sounds, Is there an unwritten rule as to what info should be shared and what is just part of everyday life now? This is how I have been handling that question, Please tell me if you would agree with this. If I have episodes, I ask myself, "would you have made an issue out of this before your dx?

t have the energy. I have had a lot going on over the last few months and I decided to ramble about it in my journal for those who care to read it. I didn't want to take up everyone's reading power limit in one post lol.. I hope everyone is doing well. I am trying to stay positive about everything going on. My 2 year diagnosis anniv is coming up next month and I don't feel any closer to understanding what is happening to me than I did then.

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?

I have had MD for 18 years. Been on Avonex, Betaseron, Tysabri, and now Tecfidera. Unfortunately, I'm also on lots of other medications, mostly due to terrible central pain. My neurologist made me stop the Tysabri after 24 infusions because of safety concerns. I felt my overall best while on Tysabri and have asked him if and when I might be able to go back on the monthly infusions. He does not have an answer for me at this point.

Are any of you on Tysabri? My doctor has suggested that I consider starting Tysabri treatment. His neurology practice runs a TOUCH infusion center. I've been on Copaxone for four years and have just had my first flareup. My recent MRI shows progression of MS with T2 hyperintense white matter lesions in the pons of the brainstem and the frontal lobe. Several of the older lesions have increased in size. Five years ago I was on Avonex. I had multiple flare-ups the whole year on this med.

I would like some information/details from anyone who has had (or seen) the rash you can get from Tysabril and/or PML?? I have been on Tysabri 10 years so far without any major issues. I was outside after my treatment for 10 minutes or so. After taking my shirt off, my husband gasped and asked what was wrong with my back.

I've been tested twice in the last year, and they were both negative. Since you can acquire JCV at any time, I opt to have my status tested once a year since I'm on Tysabri. There is also a Tysabri antibody titre available, now. I plan on doing that once a year, too, although development of Tysabri antibodies is relatively rare.

Are you trying to write a journal through the Journal interface or through the Tracker interface? On My MedHelp, on the Journals panel, you should see a link that says, Write a new journal entry. If you click that, you should see a form that has text boxes for Title, Journal Entry and Tags. Do you see that?

I don't want to copy and paste what I wrote in my journal but if someone thinks they might want to help me can you please read it. Thank you for anyone who actually does...

anyone else doing a pregnancy journal for their child to read once they're older?:) I've been pretty loyal to mine.:) I hope my son will enjoy and appreciate it once he is older.

He feels that Tysabri is the way to go. I know that there are others here on it or used to be. I would love some insight on what to expect, how long it takes, etc... Thanks!

I will start tecfidera in 3 months I hope I dont have the rebound effect I have heard about after stopping tysabri. Tysabri has really changed the way I feel was using a walker now nothing and I do Zumba too. I hope I stay like this but having doubts. anyone using tecfidera? How was your experience.?

So now he wants to take me off of the Copaxone, I have been on for a month and a half, and put me on Tysabri. I started the application process and now waiting for them to call me and get the ball rolling on that. Now he mentioned that this is the top of the line MS medication so that does give me some relief. P.S. I did test negetive for the JC Virus. Any thoughts, experiences etc on this Tysabri??!!

side effects for each other medicine and now this with tysabri. Has anyone else been on tysabri and developed c. Diff from it? If so, what did they do to help it? Stop tysabri? Any information would be greatly appreciated.

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.

Tysabri journal

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