Search the web for the brand of IVIG

September 14, 2007 at 10:26 pm

you have used. One primary s/e is a thing called ‘puritus’ = blisters of the skin…that’s from Gammagard’s ‘prescription/prescribing information’..

I had this reaction, tho only on my hands and feet – where I was sort of still sweating…. A quick visit to the dermatolgist quickly got me a ‘menu’ of topical steroids to apply to KILL that really ultimate itch and those blisters! My dosages of pre-meds have since changed from lots of tylenol plus a little benedryl to all benedryl….it’s seeming to work. Knock wood. IT IS ONE VERY TRULY COPLETELY ITCHY THING!…getting the steroid salves…well knocked it out totally within two days!

That docs say ‘Never heard of it’ is a lame excuse..there should be lots of preliminary testing about what Ig-A’s G’s and M’s a person can tolerate without toxic allergic/anaphalytic reactions…that’s why all brands aren’t the same for all of us. That’s why many of us have to take different sorts of pre-meds…We are different. The ‘reactions’ are LISTED in the fine print of the meds prescribed. Should a hospital change to another brand not specifically described…the FDA policy says: The infusing dispensor should notify the prescribing physician within 10 working days of infusion. The physician then should NOTIFY the patient within 14 working days of the change upon receipt of their notification…Sounds like something’s getting lost in the translations. Not to mention the doc hasn’t read the ‘prescribing information’ in a while.

One note here? I’ve totally escaped the ‘shingles’ issue. Tho IF at a future date I was diagnosed with that….well with all the other auto-i issues hatching, well, why not one more?

The hereditary issue is a whole other kettle of fish tho…to get any doc to go that extra step to do testing for genetic issues, well, even if you have a family with connecting potential ‘issues’…the doc has to JUSTIFY the expensive tests to insurance companies…it’s a LOT to justify an the tests are expensive…unless you find yourself lucky to be in some sort of clinical trial that is all-encompassing…

CIDP is considered an acquired ‘secondary’ immune issue…that puts us in a ‘second class’ status compared to PRIMARY inherited immune issues and taken steps further immune therapies are ‘off lable’ for CIDP. Some CIDP’s are primary immune conditions at base…but only when you get the testing? Round Robin in getting that!? I hope this all helps in any little way !