Reaction during tysabri infusion #2

Well I guess if someone is going to have a reaction to a drug, it will be me    This morning, when I was about 1/2 way through my infusion, I felt my face getting hot.  I just thought I was having a hot flash   Then about ten minutes later I experienced shortness of breath, tightness in chest, and pain in my upper back.  I still did not mention anything to the nurse -- hoping it would just pass.  Dumb!!!

She then came in when I was done with the infusion and noticed my breathing and asked if I was ok.  When I told her was was going on she immediately got my neuro who listened to my heart (was ok), had them take vitals for the 5th time (they take them every 15 minutes during the infusion), and ordered bendadryl. My chest was also flushed by this point.  Luckily I still had my iv line in.  about 10 minutes later, I began to feel ok. 

They then made me lay down for an hour and my neuro came in again before they would release me.  He did not feel it was too severe of a reaction (and it was not compared to IPIR's from copaxone) and said I would now have to premedicate with benadryl prior to each infusion.

Hopefully, this "stuff" is working!

Barb,   Ugh, I’m sorry you had this reaction! That must have been so scary, and I hope you’re feeling okay now.   I’m really glad this won’t prevent you from getting future infusions though. Yay for benadryl.   Hang in there, okay? Sunny

Thanks everyone!

Just a note: My reaction was to tysabri. I had to quit taking copaxone (neurologist's orders) due to more severe reactions than what I described above. I plan to stick with tysabri

mystery reader said...
Thanks everyone!

Just a note: My reaction was to tysabri. I had to quit taking copaxone (neurologist's orders) due to more severe reactions than what I described above. I plan to stick with tysabri

Sorry. My bad! I knew you were on tysabri...and goofed.  I'm glad to hear you're sticking with your treatment.

Hello to Irishkitt..... i out of 10 people will experience an immediate post reaction to Copaxone, and even then, may not ever experience another episode again.  Although it is very scary to experience a tight chest, and anxiety etc - if you are prepared for it to happen, and know that it only lasts for about 15 minutes - then it will make it easier to manage.

The drug company and my neurologist advise that the situation is not dangerous, it is just very alarming, if you are not prepared for it to happen.

Now this has not happened to me yet, but I have no doubt at one stage or another, it will,

Irishkitt, I do not think you should stop your copaxone. Did you consult with your doctor. How long have you been on it before you had the post injection reaction. 

I really think that you should reconsider stopping it.

Just my thoughts

Gary

Barb,
I am sorry ou had to deal with uncomfortable side effects from TYSABRI. I know from the last 14 months of taking it myself, It is pretty scary when a side effect comes up. But, I also am so thankful at how serious they take it. The main thing we need to always remember is 'communication' with the ones who infuse us. Do they also leave you with a little alarm button if the infusing nurse should leave the room. I'm pretty sure they already told you that if anything, anything at all should occur(no matter how petty it seems to you at the time) we need to let them know. I have had to have only One infusion stopped on me. Was not the same side effects you just experienced, But they stopped that infusion immediatly. At first I was put off, then realized, wow I do at least feel more safe knowing they take this stuff serious.
But you haven'y had any issues since then? Good luck on your infusion next month. Thank God for premeds. Hopefully next month will go more smooth! You have a lot of people in your corner, including me.

Lori (msmomof4)

Barb,Wow that had to be scary! Good for you that you picked yourself up and are moving forward with the infusions..Really glad the benadryl helped you...I know all will work out for you just a little "glitch" and they found what to do..Good Luck to you..................Barb