tysabri user diaries

My advice is research the medication, read the Tysabri diaries online, read the comments on this forum from others....because it affects everyone in different ways. Email Cosmobirdie (Rita). We talk all the time and we both have had different experiences with the drug, but also have had alot of the same experiences. I think it has been easy for me and know she has a harder time with it. This is a personal choice you have to make for yourself...

Linda, I know you are on Tysabri with great luck. But if I'm thinking right, Tysabri wouldn't be offered to a first time DMD user unless there were highly unusual circumstances. It is considered a drug to be used only when only the CRAB drugs were ineffective.

Does anyone have information on Tysabri? I haven't been told much on it, although I have been told by 3 different doctors I should take a look at it. I would like to know what others on it experience or experienced while on it?

Hi, Yes I have MS, I was diagnosed in Dec. 2010, I have being with a lot of symtoms, especialy that invisible symtoms, like ms hung, electricity and more. I was in Copaxone for about one year, then my neuro decided to move me to tysabri, I started tysabri two months a go. But I don't feel good.

I am another Tysabri user - I will get #48 next week. I started on Rebif first, just like GG. I was on it for 6 months, but I continued to rapidly decline, and was sick all the time from the Rebif. I was shocked when my neuro suggested Tysabri, but after much research and reading, and realistically weighing the risk vs benefit for me, we decided to give it a whirl. I have since found out I'm JC positive, but am continuing with the Tysabri at this point.

Hi. I'm a Tysabri user who thankfully has a negative JCV status. I'm on my 2nd year of this stuff, and I have no plans to stop anytime soon, because I haven't had a serious relapse since I've been on it (knock wood). I'll get my status tested once a year, and my neuro doesn't plan on more MRIs unless I change DMDs for some reason.

Thanks all!

Anyone watch The Vampire Diaries? Whose your favorite character and why? Also, what do you think and Damon and Elena together?

So if in my food diary I see myself, my name and anothet version of my name in the drop down menu, how do I merge those three food diaries? If I can not merge, how do I delete the extra cloned records inside the food diary tracker? I stopped using this site and the app for about a year when I could not resolve this problem. .... and it prevented proper app sync.

Hi Ellador, Welcome! I'm not a Dr. but progressing rapidly and a-typical MS is a situation where Drs will explore other possible causes. So, I'm not surprised to read the 2nd opinion Dr. said atypical but what else could it be... That's a good thing, and I wanted to reiterate it here because I'm guessing you should have hundreds of mimics ruled out by now. That said, I'd like to steer you to our "search this community feature.

The injections only work 33% if started at the beginning stages of Relapsing Remitting MS. There is Tysabri an infusion and their are drug trials for oral medications. Sometimes they can even use chemo but it is rough stuff. Unfortunately to date these are the only proven treatments. Some people go to other countries to get stem cells. The problem is stem cells can't repair damage they can only in some cases slow future damage but usually only for awhile.

Nichlous like vampire diaries original vampire. I love how it's pronounced. I only say that because I figured you got the name cylis from vamp diaries.

I was diagnosed with relapsing a remitting ms 1 yr ago. I had a very aggressive doctor that put me on Tysabri infusions even though I had never tried anything else. After research and being so terrified of the brain infection which causes severe disability or death I changed doctors! I have been on Aubagio, the new pill, for 1 month and have not had any problems. I emptied my hair brush the first day to see if I would have hair loss, which there is nothing out of the ordinary.

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.

Tysabri user diaries

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