Yes, reactions can and do happen?

May 24, 2010 at 8:25 pm

And WHY oh WHY do docs ever read the prescribing INFO??? It spells it ALL out there clearly and almost in normal [not medical] English!
THAT is why it is KEY to know what you are being infused WITH and web up the ‘full prescribing information’ of each brand. Each ‘side effect’ I encountered [not many BTW?] was listed, A lucky trip to my dermatologist for the different sorts of ‘ITCHES’ did the trick, but getting to see the doc while I was in ITCH phase was trickier? Then I got lotions, potions and cremes to put on the ITCHes and VOILA! There are also ‘headaches’ of a super scale, which can be horrid… ask only if you get one? Otherwise be super hydrated before an infusion and sleep after one! After all, you’ve gotten an invasion of immune stuff into you doing war with your bad ‘program-error’ stuffs! That war monthly takes a bit out of you, or more?
Substituting the ‘prescribed brand’ the doc ordered? Be sure you make a copy of the orders before handing the original OVER? IS a FEDERAL LAW No-NO!
Check out IG-living magazine for all sorts of good information [it’s free, and your name is only on their and one other web link….period. That part I love]
I subscribe to the magazine [Free], but hand it out to friends or family or others who STILL don’t get it!
OK as to IVIG treatments? I’ve had them for 6+ years now, with only one bad reaction and that was in a hospital to boot! THEY didn’t know things weren’t right – I HAD to TELL THEM? They got retrained. I’ve had them at home for the last 3+ years and it’s the easiest on me and simply requires a bit of planning and coordination to get IG delivered and then weather cooperating so the nurse can get here to get the line in and ‘infuse’ me.
I couldn’t do steroids, at my onset I was almost w/Osteo; I was at risk due to other issues later for plasmapherisis. Really IF prudent sterile procedures are done [even at home?] infusions can be done safely. AND you are merely putting new immune system fighters into your body w/a bit of stuff that helps it get into you. I FELT IT WAS THE SAFEST WAY? And, I STILL DO!
Further? It’s really been an ‘off-label’ practice to use this for the last 30-40 years! It’s only been in the last 4 years that Talecris, the maker of Gammunex conducted a clinical study for approval. Prior to that the attitude was ‘why go thru the testing if we can give it w/o?’ Thing is, insurances are getting more picky about such things?
Do keep in mind that w/o good insurances this stuff is not just ‘dear’ but RICH! It IS special stuff. But for some of us? It works, and well. Some others? Don’t notice a difference. BUT, if you don’t get your prescribed brand consistently, How are you going to know? I knew when Id gotten substitutes and I really suffered at the lack.
You are likely suffering from ‘overload’ now? I understand this, yet these are key things to learn about from the get-go! Not to know is a worse problem.
Keep learning and hoping for improvements, some come fast? Others dreadfully slowly! But they can and DO come if you persist! Hope and good things!
Please don’t be afraid to ask questions? Not ONE is too silly or insignificant to ask. All are important, and many here have experienced any question you mite have had more than once?
We’ve been THERE! Done THAT! too many times to count? Keep smiling? A sense of humor can help you thru sour periods. And many of us here have had the sweet and the sour! Personally? I much prefer the absurd or silly! :}