Reaction to Tysabri?

[daisy.girl]

I had my second infusion on Wednesday of last week.  During my infusion, I was freezing/chilling. I asked for a blanket and a little later, when I was still so cold, they adjusted the A/C. Nothing was said to me that chills could be a reaction.

As soon as I left, I felt nausea, dizziness, off balance, jello legs, I fell against the wall outside of the building on my way out.....and I had this internal tremor/vibration shaking feeling inside. I called my neuro, and was told that it was anxiety as a rare side effect of Tysabri. (I have never had anxiety)

They called me in Klonopin

Has anyone heard of Anxiety as a reaction/side effect of Tysabri??

[daisy.girl]

thanks guys....
Here is my problem. My neurologist's office is my infusion center! and my neuro has agreed to waive my co-pay portion of each infusion and only collect only what the insurance pays.
I did call Biogen yesterday, and they told me, that they cannot make a infusion center keep you the second hour. It is recommended, but it is at the discretion of the individual infusion center.

I just wish I knew if these are reactions/side effects? I could not find anxiety written anywhere as a side effect, however, on the NMSS forum site, someone else posted almost my exact reactions of a shaking, internal tremor, increased heart rate feeling.

[Guitar_grrrl]

I never got chills, etc., from Tysabri, but I was really tired for the rest of the day, and the next day, too.

If your infusion center is not going by the TOUCH protocol, RUN, DON'T WALK to your neurologist and demand to be treated at a center that uses the TOUCH protocol.  I'm serious!  Tysabri is not to be messed with.  

"I scare because I care" ("Monsters Inc.")   :-)

[AMO]

I would diffenetly make them go to protocal next treatment.
If they don't do something that you think they should, call them on it.
There is reason TOUCH has rules they do, and they should not be so lax.

I have read chills can be a side effect.
Maybe have them check your vitals after. i hope the kolonopin is helping.
be well, amo

[daisy.girl]

I did not stay after. As soon as the infusion was finished, they removed the IV.....and I left. They did not flush the IV line or make me stay even one minute longer.

I have never had anxiety, but I didn't think that would be it either.

[Sumanadevii]

I don't take Tysabri but am wondering if they had the drip going too fast?  

Those symptoms don't sound like anxiety to me but I am not a neuro.

[LATW]

Did they give you one of those little booklets that tells about Tysabri?  I will be on my 4th infusion this Friday.

I do feel weekness and chilled a bit after I am done.  I am already on Klonopin so I am sure it is helping me get through this.

I also feel nausea and have to get something to eat right after.  I sleep during and after my infusion.

I get the internal vibrations off and on and they have had nothing to do with my medications.

If I were you I'd try not to worry too much and take the next infusion. See how you do.  

They did watch you for an hour after your infusion I hope!

LA