Allergic reaction

[cranberrysauce]

Today was my second infusion and now I'm just disappointed and frustrated. I got a third of the way into the infusion and a hot, flushing sensation swept over me. I called the nurse over and hives began appearing all over as she was shutting off the infusion. I got oral benadryl immediately. When I started getting light headed and feeling tightness in my chest, I got more benadryl through the IV. Within about a minute things started to get better. After about an hour I felt back to normal (well VERY sleepy but normal).

I went immediately to my neurologist's office and he thinks I should stop. He said somewhere down the line, if I'm really desperate, we can try again with a lot of pre-medication but he doesn't want to do that now.

I guess I'm going to switch to tecfidera. But, I'm really disappointed and was hoping tysabri would finally allow me to go a year without relapse. I just feel really stressed. I am JCV+ so my husband and I spent a good while discussing whether I would do this. After all this research and convincing myself this could really help me, I barely even got to take it. I really spent more time deciding to take it than actually taking it

[LL60]

cranberrysauce -
I am really sorry you had that reaction to Tysabri. After all the research you and your husband did to pick the right med and then to have this happen.

From the very first, I have always taken pre meds to ward off hives and headaches. Because the Benadryl makes me sleepy sometimes I refuse it if I have something I have to do that evening after an infusion. Next week I could not get off work like I usually do so have to have a late afternoon infusion so will be driving home in heavy Friday afternoon traffic, so will not take the Benadryl. But I usually take 50mg and also take Tylenol so I don't get a headache.

I'm not sure if taking premeds would help you now that you have had a reaction? It seems your doctor thinks so, since he said maybe down the road he would try Ty again with pre meds. Why not try now? But that must have been a scary thing to go though. Would you even want to try again?

I go for #51 next week and am also JCV+. It has been a great med for me. I was on Copaxone for 5 years and it did nothing for me. There are so many choices out there now with a couple more coming up. All seem to have side effects. It is a hard call on what is best.

Do you know yet what you will do? Is it tecfidera for sure?

[cranberrysauce]

I just really don't know. I spent a good amount of time reading last night about others with allergic reactions to Tysabri. It seems like a benadryl and steroid drip can help combat the symptoms.

I'm a little nervous because when the benadryl wore off last night the hives came back. Same thing this morning. They go away after about 30 minutes of taking benadryl. I was also given oral steroids too. I'm nervous I'll have to take oral steroids and benadryl every day if I try tysabri again. I'm just exhausted today because benadryl puts me to sleep in about 15 minutes

But, maybe if I medicate before this won't happen! I just don't know and i'm a little nervous to try.

I was just really hoping for some great improvement on tysabri. I hear how so many people get quality of life improvement. I'm not sure tons of antihistamines are going to make me feel better since, like most of us, I have fatigue.

I'm also nervous about tecifidera since the side effects in some people seem a little miserable. So, its not as easy of a choice now.

Anyone else have experienced a full blown allergic reaction and stayed on it?