IVIG Long Term Effects

Does anyone have any information on the long term effects of IVIG on a patient? My daughter is 14 was diagnosed just about a year ago and is going through her 3rd round of IVIG tomorrow. I haven't been able to find any data on the long term effect anywhere. Any information is helpful.

I was diagnoised in Jan of this yr, I have been in the hospital 5 times, to receive Platlettes and IVIG, I have also had my spleen removed,as well as been on and am still on prednisone. I have been to the Dr 3 times this week alone. i am told my case is Chronic and I am not responding like most. They tell me I am in the 10% that dont respond to the treatments. but from what I have been told about IVIG is that it is a protein that helps the platlettes last longer, Of course I could be wrong because i have been really confussed about all of this. I hope your daughter does Great and I will pray for her. I go back in on Monday and they are wanting to start some Chemo treatment on me. I am really at my breaking point. This website has been a God sent to me. but I am like you, not alot of info on any of it.

I have not been able to find any either. I do know that according to our hemong Dr. It can mess with your immune system. My 4 month old has now had three rounds they over shot her count is now in the 800's so waiting for them to come back down a bit. Dr said just make sure that she is not around anyone who is sick what so ever because the IVIG depletes her immuune system. Hope that helps!

Hey -

Our son was diagnosed 10-1/2 years ago and has had many rounds of IVIG - probably 15 over the years, but hasn't had IVIG in the last 5 years I'd say. I'm a little fuzzy on details because we haven't been great about keeping specific records, although the doctor's office has all that.

Anyway - we were never told of any long-term effects and the doctor never said that to us about keeping him away from sick people after IVIG either. Brady would actually have bad reactions to IVIG (severe headache, vomiting, etc. ) and be wiped out for several days after IVIG and would miss school, etc., so I guess he stayed away from people anyway but it wasn't on purpose...

Brady is now 15 years old, 6'3", 175 pounds, never gets sick, plays competitive basketball, wakeboards, fishes, etc. - in other words, he has a very normal life. So we haven't experienced any long-term effects from IVIG. Besides having lower than normal platelets (his count was around 60k when we checked in Dec. '11) his blood work is fine.

Good luck with everything. I know this is a difficult road and we just want our kids to be healthy. Hang in there and hopefully your daughter will recover soon. Good luck with the IVIG!

Wow, Brady is a tall and thin guy. Sounds like he is a living a full life, that's wonderful. We have to let them live, don't we. I am trying but it's a little hard after 5 years of not worrying. But, I will get there. I did let him go work summer camp but I worry everyday but letting him do it anyway. I have moments when I freak inside, but just keep myself busy. Beth, Take care.

Aaron had IVIG once but didn't get a response (age 6).

IVIG is not known to deplete the immune system. That was a very odd comment for the doctor to make.

This is a good site Re: IVIG:


bdipharma.com/Clinical-What-is-IVIG.aspx

IVIG isn't a protein, its immune globulin taken from a pool of donors (blood product). It works by modulating the immune system. Its a temporary modulation, though in some cases kids will go into remission after treatment. It is not known to have significant long term negative affects.

The problem with giving IVIG many times, or any drug with ITP for that matter, is that it often loses its effectiveness after a while and it's good to keep something that will work in case of emergency or if surgery is ever required.