Tysabri history
Common Questions and Answers about Tysabri history
tysabri
I had been on Tysabri for 22 month's and just recently stopped. I was wondering if any new info. is out there on the drug Rituxan for MS? I have SPMS with RRMS. I was in a study 3 yrs. ago at UCSF and did really well on Rituxan. However, Rituxan is not an approved drug for MS and at that time my insurance would not cover it so I had to discontinue taking it. Or should I just take a break for awhile and not take any ms med"s?
I have been treated with tysabri for about 18 months. (Prior, all the CRABs) I had a MRI recently reviewed by same radiologist who did several of mine in 2008. He notes increase in size of specific lesions from previous reports including his own, yet refers to them as unchanged. He also notes prominent perivascular spaces are seen within the lower basal ganglia bilaterally. I can see it clearly on the film as well.
They are 200 miles away, but we got to see great friends. So the specialist saw me in pretty much top form, but due to my history, recommended Tysabri.
I had my first treatment and got a sinus infection that night. It took 8 days for the infection to heal after I finally had antibiotics. So I had an infection for about 14 days. Today I am pretty sure I am in a flair, but the list of things I have going on is beyond typable.
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.
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.
I don't even know where to begin. I went into the TOUCH Program thru UCSF in order to do treatments of Tysabri. For those that don't know, Tysabri is still being closely monitored and you have to be involved in the TOUCH Program and visit the Dr every 3 months for them to monitor your progress for the first year. (so I was told)
So that means a 250 mi trip one way every 3 months and if I have a flare I have to go in sooner and be examined before I can have another treatment.
When arbitration and counseling doesn't work, it's time for a divorce. You've given it a fair shake.
My sister took Rebif, which is a three time a week shot medicine. She had to titrate up until she reached the full dose. She still had headaches and flu like symptoms until about the third month--after that, no problems. However, she did develop an allergic reaction to it after about a year and had to stop. She's now on Tysabri.
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??!!
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