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.