I am feeling AMAZING one week after my first maintenence dose of IVIG.. I had forgotten how it feels to feel "normal"!! it has been so long, still not back to my old normal.. but hey Ill take this as a new normal!
Anyhow, I was curious if anyone else had side effects from IVIG like this - i have a rash on my palms and feet- like teeny tiny blisters they itch a little, but not a lot.. my neuro wanted me to see a dermatologist to see if it had anythign to do with all my wierd neuro symptoms, but 'im thinking a reagular dermatolgist won't know if this looks like an "ivig reaction" rash..

Also, anyone else get chest pain at the beginning of their infusions?? I noticed it both times- just a wierd chest pain for the first 15 or so minutes and then it gets milder as time goes on.. but my chest was kind of "sore" for about a day afterwards too- and then i just started feeling great.. soo just curious if i'm "normal" with these side effects! Hope yall are all doing well!

Nope haven't had that. I got a treatment today, I will ask the nurses. They are very helpful and knowledgeable.
Mike

I would get medical attention for this before any further infusions:

http://dermnetnz.org/treatments/immunoglobulin.html

Yes, you need to discuss this with your doctor ASAP.

I used to get 2 tiny itchy bumps at the base of one of my fingers after every infusion. Same place, every time. The brand was changed and that has not been a problem since. However, on my IVIG instruction sheet, it said it was very important to make the doctor aware of such reactions.

I have had those symptoms a few times. It's been five years on the ivig for me. They are normal, try taking Benidryl before your treatment, it works for me.

Glad you are feeling better.

I have been getting infusions for 3 yrs. Three times, once the next morning and twice the same night, i got a rash on my right thiegh. When I told my neuro about it, he said that was unusual because any reaction to IGIV's usualy appears on the chest. it was like he did not believe me.

The worst of the 3 reactions happened the only time I did not pretreat with Benidryl.

Tony

Thank yall so much!! Yea, I had mentioned it to my neuro at last appointment - she didn't think that it was related to the IVIG and wanted me to see a dermatologist in case it was a missing puzzle peice to this whole thing, but I have a feeling it is from the IVIG.. and therefore the dermatologist might not know much about that (it's a suburban dermatologist). It doesn't bother me much and is a SMALL price to pay if the IVIG helps me feel like this!! I love it! I told the infusion nurse about the chest discomfort, she said that is pretty common from what she sees, that it's usually just a rate issue.. they went pretty slow - we only got to 75.. she said some people just get chest pain every single time.. I might take a benadryl when I get home too, i wonder if that will help - they give me 25mg before- but just that knocks me out!
Thanks so much yall, yall are great!

Since you have a clotting disorder and have chest pain every time you get an influx of fluid into your circulatory system, it might be a good idea to get a 2nd opinion from a cardiologist. Have you ever had an ECG/echocardiogram/stress test (real or chemical)?

The reason medical mistakes happen is because ALL symptoms are chalked up as normal. They aren't always normal.

And the chest pain and rash might be 2 symptoms which are not necessarily related.

I'm going to say this again. Do you want a podiatrist to do a colonoscopy or a graphic designer to fix your house's plumbing or a politician to fix anything?!! You need the right specialist for the right job. It's a very good idea to have a dermatologist look at your rash. Take photos of it in the meantime. Or have someone else take the photos, someone who has steadier hands. It doesn't matter if the dermatologist is not from a research institution. Rashes have very specific signs that doctors look for and they can do a biopsy if necessary - and send it off to a research institution.

I just don't think chest pain, whatever the cause, is anything to dismiss. Pre-treating and post-treating with Benadryl and Tylenol is great, plus lots of water, but you really have to take new symptoms seriously.

And it would behoove you to listen to Mrs. D. A D-dimer is not an unusual test to have, after you've had IVIG and chest pain. Have you ever had that done?

It's great that the IVIG is working for you. I hope it continues to be something you can have.

If I seem overly concerned, it's because I've seen one too many things get missed by doctors when a simple test or two could've kept someone from more harm.

Annie

Thanks so much Annie!! You always have such great advice, I really appreciate that!!! I had a d dimer ages ago and it was negative.. I take two asprins for a week after the IVIG infusions and the day before too.. just to be safe with the blood clotting disorder! I don't have any chest pain now - just right at the beginning of the infusion and for 24 hours mildly...
I do need to go see a cardiologist. I never have before and since this whole mess started my heart rate has been fast (until this week- first time in 8 months!!) I think it's just that I am SOOOO tired of dr's etc that I just cringe when I think about seeing even more!! But I know I need to and that is the smart responsible thing to do.. soooo I'll call my dr and get a referral this week.. Now I have more energy I can get the energy to see more dr's I suppose
I have my derm appointment on tuesday so i'll go ahead and see them too.. and good idea on the pictures- now my hands are MUCH more steady.. so i'll take some pictures in case it changes- i worried what if my rash was gone by the time i had my appointment- never thought to actually take pics though!
Thank you so much for always being so helpful and taking the time to reply.. it really makes such a difference, and I really appreciate it!

Hi ! I get that same rash! It's a pain in the butt but usually clears up and then my hands peel about a week later. I saw a derm and they said it looked like eczema in the palms. Please do report this symptom to the pharmacist that supplies your IVIG. I think this is one of the lesser known side effects, and it took me 4 months to pinpoint it's origins. the more reports of it the more likely they will be to tell others about the possibility. Recently I've started getting them behind my ears, and getting large red bumps on my upper body. They look like big angry pimples before they get white, but there's nothing in them. I'm changing my brand so hopefully it will stop. My nuero thinks I may be becoming more allergic to something in the preparation (preservative)? I think the chest pain is something you should take very seriously! I hope your doing well and this finds you strong!
Jessica