Tysabri infusion ms

Common Questions and Answers about Tysabri infusion ms

tysabri

Avatar f tn 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.
1831849 tn?1383228392 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!
1760800 tn?1406753451 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!
Avatar f tn 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.
Avatar f tn 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.
Avatar n tn 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.
Avatar f tn 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.
429700 tn?1308007823 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.
Avatar f tn 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.
738075 tn?1330575844 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.
Avatar m tn I just heard a local neuro talk about using doses of steroids to control MS problems during the washout period (usually about 3 months) between tysabri and gilenya. Your final statement to Sarah is so wrong in so many ways - the doctor who says you don't treat a progressive disease needs to lose the medical license and get into a different line of work. There is definitely treatment for all of us...
Avatar f tn So I just finished my 2nd infusion about a week ago and was wondering what people's side effects were from that. My body felt like I had a severe flu for like 3 days :( . How long also does it take to notice the drug is working for you .
1486292 tn?1291066898 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?
2063887 tn?1337829746 Chris - I had 14 infusions of Ty and the only side effect I had while on it was mild migraines and other symptoms flaring up about 1 week prior to being due for my next infusion. I can also say that prior to Ty, I was on another DMD for 1.5yrs that didn't have any positive effects on stopping lesions from being active or growing. Since being Dx'd, I've had extreme pain in my hips and thighs and sometimes the heels of my feet, but that last one is rare.
1896537 tn?1381900009 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.
Avatar f tn 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.
Avatar m tn 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.
Avatar f tn Make sure that you ask about how they will monitor you JCV status in order to manage your PML risk. After infusion # 18 I converted to JCV +, so I stopped using Tysabri.
Avatar f tn 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?