tysabri infusion ms patients

After waiting for insurance to approve and waiting for rebif to clean out of my body I had my first tysabri infusion on June 3rd, 2014. By the next day I could tell that it was easier to get up and my balance seemed better. I didn't notice anything else but was excited about what improvements I would have in the future. I felt the same after infusion #2 but was hoping for more. After my third infusion I had a bad headache for 2 days and didn't feel any improvements.

http://www.medhelp.org/posts/Multiple-Sclerosis/Tysabri-Users---Past-and-Present/show/1569374?controller=posts&action=show&id=# If for some reason that doesn't work, just put in "Tysabri users past and present" in the search area at the top and you should find it. I go for my 40th infusion tomorrow. Feel free to PM me if there's any way I can help.

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 DH - Welcome to our group. I am currently getting Rituxan (rituxmab) and before this I was on Tysabri. They are the only two DMDs I've been on. I have had good experience with both meds. Tysabri lasted about 20 infusions before it stopped working. The Rituxan seems to be doing the job now. I started Rituxan in November of last year and finished my second round yesterday. I had no adverse reaction of any kind to either med.

i am going to guess you are not seeing an MS Specialist but a neuro who also treats other neuro disorders. An MS Specialist should know that you don't have to stop tysabri after 24 months. The odds of developing PML are constantly changing and yes there is a mark at 24 months that raises some eyebrows. But the number of infusions alone is no longer the benchmark for stopping this drug.

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?

Hello all, It just suddenly occurred to me that I hadn't logged in here for ages so I thought I'd see how everybody is getting on. Also, for those of you who knew I was not on a treatment for a long time, I have started Tysabri! My second infusion is on Thursday & I'm daring to feel very positive. I was very surprised by the first infusion.

Next month will be my 8th infusion. It does take about 6 months to get the full effects of Tysabri. I was very concerned about PML & have followed it much. The earliest PML happened was at 8 months for a person using it for Crohns, before it was pulled from the market in 2005. The latest case was after 26 infusions in 2008. I thought I will just start it & not worry about it until I get to that 8 month and decide then.

I guess there has been great success with MS patients on it, too, but there are higher side effect risks than the normal DMDs.

I recently had my 9th infusion. I've noticed a fiery joint pain in my knees 3-5 days after my infusion for the past few months. It eases after a week or so but doesn't go away completely. My doc doesn't think it is Tysabri because only my knees were effected. As time goes on I feel like more joints are involved. After my last infusion (5 days) I'm experiencing the same "fiery" feeling in my toes and stiffness in my hands.

and unable to tolerate the drug reactions. We then waited for Tysabri. I had one infusion before they pulled Tysabri off the shelves -- and my neurologist decided to send me to an immunologist. His expertise in auto-immune diseases and related off-label prescribing was what we needed. I spent nine months on Imuran (an anti-rejection drug) with no luck [still flaring 5-7 times a year].....and then IVIg came up -- it was that or getting back on Tysabri which by that time was up for re-release.

As I type my 12th Tysabri in fusion is flowing into me! It's hard to believe that it's been a year since my diagnosis. I've learned more about MS and life with a life long disease. I've made a few minor changes to accommodate it, but fortunately my life is largely unchanged. Believe it or not, learning I have MS has explained a lot of seemingly unrelated issues. In that sense my DX came as something of a relief :-) Here's looking forward to 12 more Tysabri juice boxes!

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!

I was changed to Tysabri and had my first infusion yesterday and everything went great, no reactions or side effects. However, I could swear I have more energy today. I have not been shopping for months and today I was able to go shopping. Is this my imagination? Just a rare good day? Or could the med already be having an effect on my fatigue? FYI, all other symptoms are pretty much the same.

My MS doc always gives a small dose of Solumedrol, which is much larger than a usual prednisone dose, to his new Tysabri patients. They get the IVSM in the first hour. Then they get the Tysabri in the next hour. His experience says that the mini-dose of IVSM helps the Tysabri get to work faster by cutting any inflammation in our system. He does that for the first three Tysabri doses when just beginning this therapy. I hope you are less itchy today and can reach your doctor in the morning.

Hi I was diagnosed with MS in May of 2001. My neurologolist wants to me to try Tysabri. I have already tried the shots for ms and they don't work to well with me. But I already have most of the side of effects that go with tysabri. Please help me.

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.

My sister had her first Tysabri infusion today and all went well! I was so anxious for her, but for no reason--she sounded great. She had to start the Tysabri because she was getting this terrible-looking, itchy rash which hurt which her neuro (actually our neuro) had said was probably a reaction to her Rebif. She also was progressing in her disease.

My Tysabri is $49,000/year. I qualify for $10 co-pays on the Tysabri, and Biogen-Idec is chipping in $120/infusion. My insurance company picks up all but the $4500 max out-of-pocket, so I'm still stuck for that. It's hard to squeeze that into my budget, but the Tysabri is working so well for me, I can't see stopping it, now.

m still OK Tysabri wise speaking. My neuro likes to reevaluate Tysabri use at 24 months. I had infusion # 18 last week. He thinks I would be an excellent candidate for Tecfidera. He said that if DMD'd were ranked from 1-100, in terms of 'power' Tysabri would be 100 and Tecfidera would be 75/80. As my MS seems to be pretty well under control. I may have needed Tysabri to get it under control. but Tecfidera should be able to keep it under control.

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.

My symptoms all magnified, and getting through a day of work was monumental. I guess it was all a matter of time before I flared. My last Tysabri infusion was on 11/2/13, and it took my new neuro and new infusion site two months to get their stuff together. The day before yesterday (1/8), I finally got a Tysabri infusion - Halleluiah!!! Hopefully, this flare will subside soon. I'm not one to go for IVSM unless I absolutely have to.

Tysabri infusion ms patients

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