Originally Posted by bny806

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!

Originally Posted by AnnieB3

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

Originally Posted by Sonomagirl

Hi,
I had my second round of IVIG for 5 days. I went through normal side effects of headache, chills and some nausea. By the last day they lowered the drip from 2 to 1 and had no side effects. I'm still drinking lots of water and giving the treatment a few days to feel better. I want to know if anyone has had a different reaction or response from one treatment to the next? I'm not feeling as good after 5 days as I did the first time. It has been 48 hours since the final treatment.
Thanks,
Sonomagirl

Originally Posted by bny806

Brattybrittiny - yes, it can cause blood clots, and I think that it's always better to be safe than sorry when dealing with such a serious issue as a PE... so i think getting checked out is never the wrong decision! I have gotten very sore veins from IVIG.. even my legs - which is super strange.. but I swore I had a DVT.. though the ultrasounds are negative.. My sternum will hurt with deep breaths sometimes too.. good times! My rashes no longer happen from IVIG.. I can get up to a rate of 100, but no higher or I get aseptic meningitis

Sonomagirl - oh yes,, I feel different every single infusion (and I've been doing this for 3 years now). The second round for me was the best.. though it faded after about 7-10 days.. now I am much more stable.. and just getting better all the time, though i will have exacerbations and bad days.. But, I guess since the donors are different every single time, then it isn't the exact same make up each time, causing different results.. It also depends on my other stressors - illnesses, HORMONES - that's a huge one, stress, heat etc.. I usually notice a little improvement right away, but the 4th day is when it is most dramatic of an improvement!

Originally Posted by bny806

Brattybrittiny - yes, it can cause blood clots, and I think that it's always better to be safe than sorry when dealing with such a serious issue as a PE... so i think getting checked out is never the wrong decision! I have gotten very sore veins from IVIG.. even my legs - which is super strange.. but I swore I had a DVT.. though the ultrasounds are negative.. My sternum will hurt with deep breaths sometimes too.. good times! My rashes no longer happen from IVIG.. I can get up to a rate of 100, but no higher or I get aseptic meningitis

Sonomagirl - oh yes,, I feel different every single infusion (and I've been doing this for 3 years now). The second round for me was the best.. though it faded after about 7-10 days.. now I am much more stable.. and just getting better all the time, though i will have exacerbations and bad days.. But, I guess since the donors are different every single time, then it isn't the exact same make up each time, causing different results.. It also depends on my other stressors - illnesses, HORMONES - that's a huge one, stress, heat etc.. I usually notice a little improvement right away, but the 4th day is when it is most dramatic of an improvement!