I need some feedback on this specific Ty issue!
 

Okay, I've now completed four infusions. The last two have been awful! I get through the first hour fine, the nurse comes in and removes the med, and it is my hour watch time.

I get the same flu-like symptoms I got when I first started Avonex! I get chills, headachey, and achy all over. My temp goes up one degree, and this last horribly for about a half hour.

The nurse cracked up today when I showed up in 95 degree weather with sweat pants, a warm blanket, fuzzy socks with Birkenstocks. She realized why when I started with the chills. They brought me some camomille tea (awful stuff by the way!) to help warm me up. After a half hour the chills stop.

I don't pre-medicate, but I'm sure that will be changing.

Now it is 4 hours after the infusion and I still feel a little achy. Anyone else get flu-like sxs??

One of my reactions was cold chills and shaking. I had to discontinue tysabri treatments due to reactions and presence of antibodies. See tysabri thread.

Brenda, that's too bad! How does Ty affect you after the first day? Do you feel different?

I hope it's doing good things for your MS.

I was all ready to go on Ty, but think I will wait a few months to see if my MRI looks any different. Some would say that my sxs just don't warrant Ty.

Have you talked to your neuro and let him know what is going on???

I still don't premedicate. I haven't had any adverse effects, but you can be sure if something like this kept happening, I would be talking to my neuro ASAP about it, and the premedication, having an antibody test, and trying to get to the bottom of it. I am still scheduled to see my neuro every three months, just to keep up on what is happening. We will move to a six month schedule after this coming appt, but he always said if ANYTHING is going on that concerns me, to CALL HIM!!!

I'd also ask them if they are mixing the med beforehand and refrigerating it? Some clinics do that. It can be stored, mixed, under refrigeration, for up to 8 hours. My place doesn't mix it until I get there and they have all the answers to their questions, so they don't waste the med if I don't answer the questions to their satisfaction. Having a cold infusion can lower body temp a few degrees.

I hope you get some answers and that it all works out for you! Please let us know how it's going!

Hi Brenda :). I've had 5 infusions and have been getting what I call a 'Ty hangover' the day after my infusion. This started after my third. I feel about the same way you described except it doesn't start until the day after and lasts that whole day. I feel like I did when I was on Avonex but it only lasts for one day. I'm going to talk to my neuro about it when I see him at the end of the month. I'm so sorry you're dealing with this too :hug:

Yes, I believe the center has been in touch with my neuro or his office both times. I see him on the 23rd, and will talk to him about pre-medicating. It is the next morning, and I'm still feeling a little achy, but not horrible. I'll have to take an Aleve to get through work.

I did have the regular blood work last week, because I was just starting to feel a little "heavy" if that makes any sense. Everything was fine. But I don't know about the antibody test.

I'll be following up on this for sure.

Thanks everyone for your input.

Brenda

Chris premedicates with benadryl before his infusions and has never had any problems other than being a little tired.

Brenda,

I am sorry I did not provide a more complete reply last night. I read your post right before I went to bed. I had a total of 5 infusions. As Riverwild mentioned, you personally need to talk to your doctor. I received my infusions in my neuro's office and they scheduled them when he was there due to the problems I experienced.

I did begin to premedicate after my first reaction. This occurred during my 2nd infusion. I not only experienced cold chills, but I also had difficulty breathing... And my reactions intensified in their severity to the point that during my last infusion, I was given an iv of benadryl prior to the infusion, they slowed the infusion down, and then I had to be given another iv of benadryl and oxygen halfway through the infusion due to a reaction, which they had to stop (the infusion). The cold chills and shaking lasted about 3 hours.

I tested positive for antibodies after my 4th infusion, but the advice my neurologist received was to continue with the tysabri for 6 more months and then retest. However, once I went into shock during my 5th infusion, he was told that I should not receive anymore and that reactions would probably just get worse.

When I went to the MS center at Barnes Hospital in St. Louis, they seemed to think that I was experiencing allergic reactions -- not infusion reactions. I am not sure what the difference is. In retrospect, I have realized that I was also experienced cold chills/shaking almost every afternoon that I was on tysabri.

Make sure you get tested for antibodies. It usually take about 3 weeks to get the results. So if you get tested right away, you should know the results prior to your next infusion date.

I premedicate with 400mg of Ibuprofen and 50 mg of benadryl...the only thing is afterwards I am tired and want to sleep all day.

I'm tired and sleepy the day of the infusion and also somewhat the next day, other than that, no problems.

I agree with RW. You should tell your doctor about this and get the antibody test. It isn't the same as the regular blood work you get done, it's a blood sample they send out to be tested at a specialty lab.

I don't premedicate at all, though I normally take a Claritin daily.