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Rash/Reaction to IVIG treatment?

kmiclon Message
20 Apr 2020, 02:23 PM

I am wondering if anyone has had a basic allergic reaction to IVIG treatment,and does this just work itself out?  I had treatment over 2 days, 4/9 & 4/10, seemed to be having easy recovery, but on 4/14 noticed gums sensitive to brushing teeth, then woke up 4/18 & 19 with very sore mouth (like I'd burned it all), and broke out in all-over rash later that day, not itching, just blotchy. Since it was Sunday, went to ER at end of day, had bloodwork and all looked fine, mostly inconclusive, but assuming was combo of IVIG, and sun exposure on 4th day of symptoms (?).  Started itching in the night and now having diarrhea, too.  I have a video-chat with Dr this afternoon, but I am looking for input from others on their experiences, as there is still so much doctors (and I) do not know.

Question to the group -  my understanding of IVIG is that all the treatments/donors are different, so probably the reactions are all different - is that accurate?

Appreciate any input, and so grateful for this resource and all of you - hope everyone is doing well :-)

aporzeca Message
21 Apr 2020, 11:40 AM

The topic of side effects from IVIG infusions has been discussed several times before, so check out,, and, for example. 

It is possible to have an allergic reaction to a particular infusion or bottle, which is why it is usually given with Benadryl or some such antihistamine, but if so it tends to manifest immediately.  A delayed reaction such as you describe, four days post-infusion, probably has little or nothing to do with the IVIG infusion itself.

You are one of the longest-time members of this community, so please take this opportunity to update your profile page.  It looks like it hasn't been updated since 2009, and it would be good to read how well (or not) you managed during the past decade -- and especially in recent months, ever since you decided, I believe, to receive IVIG on a regular basis.

clswalt Message
23 May 2020, 10:44 PM

Hello Arturo

I have been fighting a vertabrae problem for about 5 years and have not had any new problems with CLS. Except when I saw this post, I thought I have something to add. In the last couple years, I have had a side effect of hives and swollen face and lips during my IVIG infusion. Most times on the second day. It is rather severe at some times but nothing life threatening. My doctor and Dr. Druey suggested 40 mg of predisone and a 25 mg benedryl two hours before each infusion. This has gone on for about two years. It doesn't happen everytime. I receive an infusion every three weeks. I now find that Benedryl alone can prevent the side effect. I take two 25mg Benedryl right when the IVIG is started. If I experience any itching during, I take another Benedryl. This seems to work the best for me. Like any other side effect, I think we all respond different. You should work with your Doctor on what exactly you should try.

Since I have been taking the Benedryl, I have had very few incidents. The swelling of my face and lips always scare my nurse when it happens, but you just have to monitor yourself. The extra Benedryl usually works in an hour and the itching and swelling subsides. The itching is severe and can drive you crazy, but again not life threatening. I was told no to use an EPI pen unless my airways are blocked. I receive my infusion at home, so there is only the nurse available at the time.

Otherwise, life has been good due to the IVIG. Small problems like this I can take. I hope everyone stays on IVIG. The results have been fantastic. Normal life here except for the Covid 19.

My Doctor and Dr Dreuy suggested our lock-down in late February due to Covid 19. We have done well but we miss our children , friends and neighbors. But the chance of getting the Covid is worth the lock-down. Not sure yet when my Doctor thinks it is ok to come out.

Hope you are well. To Arturo, thank you again for keeping Rareshare going. I appreciate all that you have done for us.