tysabri message board

Hi to everyone, I've been reading this message board for months now, but unable to post because my Apple computer won't let me, don't understand why and we've tried everything.so i'm in my adult community's clubhouse using their pc. Let me first say you are an amazing, compassionate group of ladies and I'm glad to be able to read the information you post to help each other. I'm stage 3C, BRCA 2 positive, OVCA which has metastasized to the lymph nodes.

Well just heard back from my docs office and they said the rep checked a couple diff resources and indicates NO issue taking Tysabri and having HSV2 so that is great news for me!!! Now what side effects have you all experienced on this medication?

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.

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.

I have never heard of a brain infection related to Gilenya … perhaps the doctor was referring to Tysabri, although a doctor should know the difference. Tysabri also may be worth a try. Yes, it has shortcomings, but like Gilenya, many people tolerate it well and have good results. I don’t know anything about gabapentin, other than that it is not a disease-modifying drug interchangable with Gilenya, Tysabri, Copaxone, Avonex, Rebif, and Betaseron.

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?

Well, MS neuro called today, and said no more Tysabri. I have had 5 infusions so far, and unfortunately have been dealing with an awful vocal box issue(s). From having my immune system lowered, I developed a terrible problem with my vocal chords. It was so bad when they 1st looked, they had a hard time differentiating what was going on. There was thrush, ulcers. lesions and huge amounts of swelling. I have not had ANY voice for over 3 weeks! I was also not allowed to try to talk either.

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.

s neuro appt as I am sure he is either a) going to try to talk me into staying on Tysabri (noooooo as I hide under the covers) or asking me what my 2nd choice is (???) but am clueless. I KNOW I don't want anything with the word NAUSEA associated to it in any way. Anyone want to give me their experience. I'm not shot shy, have given too many of those, just being whimy and wanting as few side effects as possible.

At 20 months I had converted to JCV + and the Tysabri was no longer working. While on Tysabri I saw no change in my symptoms. As was said, that is no what any DMD is for. I had no ill effects of any kind.

Thing is, if things are getting worse, we have to do something but what is that something? I wish someone would come flying on the board all excited about how wonderful Tysabri is and how it has helped SOOOO much with pain level...but I am not hearing that anywhere. Just seems like a new med....nothing spectacular.

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.

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.

I also had to wait a long time to start my DMD. It was caused by insurance issues waiting for Tysabri which was eventually denied. We decided to use Copaxone and although I kept telling my neuro I was having really bad reactions to it, he wouldn't listen to me. I switched neuros and have my second dose of Tysabri next week. Hopefully seeing the new neuro will also really help you!! Hopefully you keep feeling well!

I was off on Tuesday to make the Tysabri run to Columbus. Unlike poor Sarah, the Tysabri seems to be good for me with none of the dreaded side effects. Here's to a good week for everyone!

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

t pick up the DMD. We always hear on this board and others that PPMS is not being given treatment but given meds for symptoms only. (I think of our Red and her struggle). Do any know? Does it have to be an actual dx of PPMS before they stop paying? Don't worry about upsetting me now. I ready to hear it.

I just want everyone to know that for every good story about tysabri there is also some bad ones. And for those of you that don't know: there has been two more cases of PML ( a potentially lethal brain virus) from tysabri. I knew that risk when I took the drug, but after having such a bad reaction the word "risk" takes on a very REAL meaning. The risks are REAL. Be careful. Be educated. Be proactive about your own health because no one is going to look out for YOU as much as YOU.

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