Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Allergic reaction after 34th infusion

Hi everyone,

I haven't been on in a while, but here I am back and ready to post... I want to let you all know about my last remicade infusion. Last Tuesday, June 1st was my 34th infusion. I have been on remicade since April '06. I had an allergic reaction to my first infusion also. Severe hives and throat closing. The first one happened after I left the doctors office after my infusion. Since then I have been on a protocol so that I can still use the remicade. Starting three days before my infusion I take 20mg. of prednisione a day and Bendadryl 3 times a day. Right before the infusion I get another dose of solumedrol(40mg) in my iv. Then for two days after the infusion I get 10 mg. of prednisone and benadryl 3 times a day. So - back to #34. I did my protocol as usual, but as I was sitting there, maybe an hour into the infusion, my throat started feeling pretty thick and like it was closing. My blood pressure went up, I became dizzy headed and my chest was burning. They pulled me off the remicade and stuck up a bag of saline. They then injected a large dose of steroids into it and also another dose of benadryl. Eventually everything calmed down and I agreed to let them start the iv again slowly. (I forgot to mention that I usually get my ivs a little slower than usual because of the first infusion reaction. So this 34th infusion including the reaction time took about 6.5 to 7 hours. That was a week ago today and I'm still taking some Benadryl. They kept me on the steroids until yesterday. Needless to say, I'm a little nervous about going in for #35. Of course, my doctor may pull me off of it. I have an appt with him on June 23rd.

I'm wondering, has this happened to anyone else here? And, what did you do about your meds after that? What did you switch to, or did you stay with Remicade?

Thanks, Wanda

Oh Wanda, that's awful and very frightening. I had an allergic reaction too, but 25mg benadryl in my IV before the Remicade was started helped. Nothing like yours, tho.

Really, that's pretty damned scary. I wonder if switching to one of the others might be helpful. I switched to Enbrel in April because the Remicade wasn't working as well as it should. It's also helping. Not as well as Remi at this point, but really good. Might be worth considering because that reactions was just to frightening.

Warm hugs and it's really good to see you,

Hi Nonnie, since my first Anaphalatic Shock (lucky lived to tell about it), I have refused any meds - foods - with sulfites in them. Please don't take chances, your reactions were too frightening.

In regard to your CPAP mask use: I also have used many CPAP masks. I have been using a CPAP for six years. I now use the Mirage Activa LT mask, and likely will get another one similiar, next replacement. I have used nasel pillows and actually liked them. When my presure went up to 15, had to stop using them. Never gave thought to going back to using them, since my presure went down to 11. I couldn't use a full face mask, there were too many leakages. My CPAP is the Resmed Elite.

Hope your feeling better

Hugs

Gerri

Hi Wanda,

Good to see you posting but very sorry to hear you suffered an allergic reaction. That would be scary! I am relieved to know they were able to take quick action to calm it and that you were able to finish the infusion, but I can appreciate why you'd be nervous after this unpleasant episode. It sounds as though the protocol they've had you on has worked well up until now, considering how many years you've been on it.

I had a adverse side effect of nausea only once (also after my 1st infusion) but have been fine ever since (*knocks on wood). It wasn't an allergic reaction in my case and I continued just on a slightly lower dose of remi plus a small dose of benadryl, pre-infusion. My next will be my 38th since beginning in Nov 04, so I guess our schedules must be different but am curious if you've ever had a treatment break?

If it was caused by antibodies to remi, I hope you'll be able to switch to another biologic safely, if that's what your doctor and you decide. I'd be interested to learn what your doctor says and suggests for going forward.

I hope you are feeling better and have recovered from this scare!!
hugs,
mig

Nonnie,

STRONGLY advise against continuing medication to which you have a known severe allergy, even if your doctor is willing to let you risk it again. My GP told me the story about one of his patients who had a bad reaction to Enbrel or Remicade (I forget which one). This patient ignored his advice and did a 2nd try despite the bad reaction (didn't want to switch, because she was getting this particular TNF-blocker for free due to family connections). The next bad reaction turned out to be fatal...

Hi Nonnie,

Good to hear from you, it really worries me about #35 please talk to your Doc and think hard before doing it, that scares me.

I looked sorry if I missed it, but how often do you do them? They recommend 6 to 8 weeks but I can't wait that long so I am on the maximum dose every 4 weeks although I haven't had 1 since March due to dumb insurance issues.

One thing Im thinking is why #34? may or may not have anything to do with anything...could your body be rebelling against Remi? The good things are there are other biologics BUT I know that if you are like me Remi has been my lifeline and I wouldn't want to change unless absolutely neccessary.

I'm sorry you went thru that, it's certainly not worth your life but I SOOO understand the lack of quality of life without it, just know we are here for you.

Lots of gentle hugs!

Lisa

PS try not to be gone too long I miss you not being here!

Hi Kat, Thanks, it's good to be back. It was very scary then and also afterwards for several days. I have an appointment June 23rd with the rheumy, so we'll talk about it then. Meanwhile, the nurse from the infusion center called yesterday to re-schedule my next infusion. I asked her if the doc wasn't likely to pull me off the remi. She said she did't know, but the doctor that was there when it happened, wasn't real concerned about the episode. Well, maybe if it happened to her , she might be a little more concerned. What bothers me is that I was already doing a protocol for reactions and it happened anyway. She also said that Remicade was the only infusion drug available for AS, that if I switched it would have to be to injections. Enbrel, humira, and a couple of others. I wonder if they do anything for Uveitis? I know the remicade got mine under control. I really don't want to go on one of the newer ones either.

How have you been? You say the Enbrel isn't working quite as well? Are you still able to keep up your theater? TAke care . Hugs, Wanda

Hi Gerri,

You know, I thought of you during this whole episode of finding out about my sleep apnea and trying to choose a mask. My machine is the DeVilbiss Intellipap, and my current mask is the Respironics comfort gel. It's not a full mask, but it covers my nose in a triangular shape. I've tried several different things to keep the masks from leaking. Like moleskin(just about tore my skin off when I removed it), a piece of cotton sock(wouldn't stay in place) and bandaids(not enough there) and have given up on that idea. Sometimes the mask rubs like a burn on my skin. I have discovered that rubbing chapstick on the bridge of my nose keeps that from happening. And when the piece that goes around your forehead was hurting, I bought a sweat band that goes around your head to put under it. That helped that problem. I also bought it in pink, to bring some feminity to the whole contraption.

The doc said mine was a severe sleep apnea also. Believe it or not, right now I have poison oak right under my nose and cannot use the mask. All the steroids from my infusion made me feel quite good so I went out to weed some in my garden. Luckily I haven't broken out all over like I usually do. That's probably because of the steroids also. That's what they usually put me on when I get poison oak anyway.

How have you been lately? It's good to hear from you. TAke care, Wanda

Thanks Mig,

I've been on it since April '06 and my infusions are every 6 weeks. I had a surgery in '08 and it got off of schedule a bit, but not much.

Yes, the protocol has worked well all this time. I think that's why it's so upsetting to me, because it happened in spite of the protocol. Probably the reason the doctor there wasn't very disturbed by it was because she was able to get it under control. I wonder, is there some way they can tell if it happened because of antibodies to the remi? They had taken my blood at the beginning of the infusion.

I do have to say also, that they reacted very quickly and efficiently when it happened. They had a saline bag ready and dropped what they were doing as soon as I alerted them. That's comforting to know.

Take care, Wanda

Hi,

Thanks for your advice...I'm giving it some serious thought. It's such a big decision and affects my life so much. There's times when I just want to chuck all the meds down the toilet. ARe you using one of the biologics? If so, how does it work for you? I need to start gathering info on the differnet options, that dr. visit will be here soon. Thanks again, Wanda