Quote:
Originally Posted by SurvivingMSwithHOPE
Hello Tysabri Pals,
Had my first infusion today. As soon as the Tysabri was placed in my IV, I felt like I had just been infused with poisen ivy!  Was so bad, I had to get the guy next to me to scratch my back LOL . Benedryl took most of that away, then as I was sitting there, I felt like my chest was getting extremely heavy and I started this cough. The nurse ran and got the doctor and turns out I had a mild anaphylactic reaction.
I carry an Epi-Pen with me, so when I heard anaphylactic, I said OH WAIT, I have my Epi. Then as I reached in my purse, I didnt have it! But more Benedryl seemed to help and I in no way feel it was a bad reaction, due to almost dying with a bee sting and knowing what a true anaphylactic emergency feels like.
They will be calling my Neuro tho and seeing what he thinks. I said NO, I want to continue, I can pre-medicate! The actual infusion was a breeze, got my vein on the 2nd try and just felt very cold going in. I was being overly stressed for no reason.
I told the nurse and the Neuro there that I will not go back to a interferon, so I really need to give this a try. I think it will go fine. I hope my Neuro will let me continue. Just like with Avonex, we learn as we go when we first start as to what we need to premedicate. Altho, anaphylactic I know is nothing to mess with.
The Neuro there was so nice, they had to wait for me to leave since I had to stay longer and he sat and talked to me for quite awhile. He said he was on call tonight and if I had any more problems at all to call him. I had a huge headache, but took a Fiorcet and it's alot better.
Sorry, so long but all excited even with the reactions!  I am looking forward to a long relationship with Mr. Tysabri.
Hugs,  |
Well Good Grief! Now y'all are making me feel like I am an anomaly with no infusion reaction.
I am sorry to hear it got a little scary for you. I am glad you went in armed with information and that the benadryl worked for you.
I know some folks who take Claritin before infusion if they have to drive home, due to benadryl's side effect of drowsiness, but they report that it seems to stave off the reaction. That may be an option for you if you drive yourself to infusion.
Did they slow down the infusion when it happened? Just curious cause I heard a lot of infusion centers do that too, rather than stopping it completely. You may have better luck if you do the infusion at a slower rate than normal.
Hopefully, some of the Tysabri users from the other board will hop in here if they are reading and let you know what their experience with this happening is and what was done in their case as to procedure.
Glad you made it through it! Keep us posted!
