tysabri vacation

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?

Know others have worse problems, but I'd just love a vacation without Tysabri side effects. I diligently took my Prilosec for the 5 days, and wouldn't you know, on the 6th day, I was back in ER that night, hooked up to IV and fluids. They had to give me a bolus bag before they could draw blood for the labs, guess I was dehydrated. I love it when they make regular rounds with WARMED blankets!

The Risk of PML is greatest in the setting of a positive J-lymphocytesC virus, greater than 24 months of Tysabri, and concurrent use of other DMD's or steroids. Those are old recommendations, and new info will change them in the (near?) future. PML is caused by the J-C Virus. A little more than half of all people have been infected with the JC virus. It generally lives asymptomatically in the brain unless something has occurred to cause the immunity of the brain to be compromised.

I haven't had any herpes flairs, yet ( I have corneal herpes), but I have had many itchy inflamed skin lesions on my arms, breasts, back, thighs, and scalp. After 12 infusions, my neuro says I have to take a "Tysabri Vacation" to lessen the chance for contracting PML. I'm fine with this, but it will be interesting to see what happens in the next 3 months.

This is regarding my previous post about the more aggressive route my neuro may want to take (Novantrone), should he take me off Rebif permanently. I've been considering the alternatives (Copaxone, Tysabri, etc), AND, Ess's suggestion of getting a second opinion. I had the thought that, if I'm going to pursue another opinion, I think I ought to stick with MS specialists. I have dealt with a couple of other good neuros I could contact, but neither deals exclusively with MS.

Well I saw my neuro today and after a lengthy discussion with both him and the nurse, the subject of UTI did not come up! There was so much else to cover, I completely forgot to ask and they apparently did too. Argh. Why didn't I write it down? No 12 year old resident this time lol so it was nice to get to know my neuro better. We had a long discussion about changing treatment.

I DO get some good from Tysabri - I get a little more energy and strength for the first week and a half after the infusion. The last week and a half, my fatigue and weakness are markedly increased, and I can't wait until my next infusion! The Tysabri vacation is Dr. P. just erring on the side of caution with the PML angle.

I don't have much going on, a Tysabri infusion tomorrow and dinner out with neighbors on Wednesday. Other than that, still unpacking boxes. Hope everyone has a good week........

The paperwork for Tysabri was done last week when my neuro returned from vacation. I stop Rebif on Wednesday when I take my last shot of Acthar. Then nothing for three months. I am concerned but making plans should I need go to into a nursing facility ...I have no idea how long the Acthar will last in my body. But hopeful? OH YES!!!! I just told my neuro I will prepare for the long run...

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.

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

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??!!

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.

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.

I had my 5th Tysabri improvement last Sunday. Since then I have noticed a major improvement in the way my legs feel and work. I mean a major improvement. My legs have not felt this good in a very long time. I have also been exercising regularly for the last month and have lost a bunch of weight. I'm trying to determine to what I can attribute the improvement. Is it the Ty infusion? The exercise? the weight loss? I'm kinda hoping it's the Tysabri.

Tysabri vacation

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