If you don't mind me asking, what has your experience with Ty been like? Any feedback would really be appreciated.

Joelle, I am happy to hear that you were approved. I have felt a bit more energetic until the past few days since my infusions. I think the cold is getting to me. At least I hope that is the problem, and I am not having a flare. I also receive my infusion in my neuro's office. My only compaint about that is that it is not very comfortable (no comfy chairs:) and while the nurse checks on me every 15 minutes there is no one actually in the room if I have a problem. Has your neurologist said anything about premedicating?

I go for #3 on Feb 6. :Good-Luck:

Hi Barb! I'm going to ask about premedicating when I talk to the next week. How much benadryl do you take before your infusion?

Hello joelle,
I was in the Antegren trials which is Tysabri. I was one of the lucky ones who actually was receiving the Tysabri, and I never premedicated with anything. After the first 2 or 3 infusions, I was extremely tired for the day or two afterwards. I didn't begin to notice a change in my symptoms until after about the third infusion. The first thing I noticed was an increase in my energy level and then I was able to decreased my Zanaflex dose and eventually I was able to discontinue it. I was off of it after the study was opened and then went back on it for just a little while until it was taken off the market. I haven't been back on it since, but I anticipate going back on it soon. I never pre-medicated with anything, and didn't have any trouble with the drug. I've spoken with a few people at the infusion center that experienced headaches and took either ibuprofen or tylenol prior to their infusions.

I would probably hold off on taking anything like Benadryl unless your Dr. suggests taking it, as you wouldn't want to mask an anaphylactic reaction to the drug which could become worse over time.

Good luck, and let us know how it goes. I hope to be joining you someday in the near future.

All the best,
Chris

Joelle, I was told to take .25 mg about 30 to 45 minutes prior to infusion. I have not noticed being more tired. I have experiencd a slight headache and mild nausea for about one day.

Chris, Unfortunately, I had a reaction during my second infusion so I am going to try the premedication. Neuro did not think it was too bad of a reaction. Of course he was not the one who had trougle breathing:)

I've tested positive to antibodies twice now and I've been on the Tysabri since last October. I'm really scared now. I don't have any idea what to do. My neuro told me that there is a lot of controversy whether to keep people on it (if they aren't having attacks, etc). I've not had any attacks but I have no idea if there is damage going on in the brain. My neuro is going to keep me on it and see. I wonder if anyone has any information on this?

Hi Pamala and welcome to NeuroTalk! :)

There are lots of us on Tysabri and we have a thread at the top of the page in the "sticky" section specifically for Tysabri users. You'll find the good, the bad, and the ugly up there, so please come join us and read the thread.

Have you had an MRI since you tested positive for antibodies? If so, what did it show?

I haven't tested positive for antibodies and haven't had any attacks or bad reactions so far and I go for #16 next week.

Pamala,

My neuro told me awhile back that if you develop the antibodies it isn't working and they need to stop it. He had one of the largest (or the largest?) trial sites in the US so I think he knows what he's talking about.

Unless something has changed from when he told me that, I don't know if I'd want to be on it with the antibodies? :confused: Maybe you could talk to the Biogen people and get their opinion?

BeeBeeY
 

Yes I'm as new as can be to Tysabri starting yesterday. I read all your posts which were very helpful to me since I know no one else on the drug. It was a big mixup getting preapproval set up but it finally came together for me. I had no problems during or after this infusion. Will try to figure out this site.

Hi BeeBee and welcome to NeuroTalk!:)

It's a huge site but easy to navigate! I hope you find your way around with no problems.

Looking forward to reading your posts on the Tysabri Info and Check In thread! It's up at the top of the page here in the MS forum.

Glad to hear things went well with your first infusion! I am up for # 18 in September and it's working for me!