LaMeka – this NORMALLY

November 20, 2007 at 2:18 pm

does not happen. It occurs [some adverse reaction in about 2 of 5,000 infusions] Two things could be happening: 1- allergic reaction to the actual infusion product; 2- reaction to the infusion process -if proper protocol is not followed, such as too rapid an infusion, reactions that you describe can and do occur; and lastly 3-how the product is handled before your infusion starts.

I have had exactly the sorts of awful reactions/feelings you have had once….in a hospital of all places. Turned out the hospital changed the ‘labeling’ to my prescribed brand of IVIG to “Brand X or equivalent’….then they did not notify me or my doc that they’d changed the brand used. BY LAW they have to inform both of you which product is being ‘inserted’ into you. Hospital nurses informed my doc about my reactions and decided to stop that day’s infusions…I don’t know about you but I hated having 1/2 bag of this precious stuff going into the trash. I called & saw my doc about the reaction, he didn’t think much of the issue, I then called the hospital…they didn’t either. I then webbed up the ‘FDA-Blood Products’ rules and regs and found out ‘we’ all had to be notified of ‘substitutions’ pretty quickly. Some IG products have either glucose or saline diluters, many have differing %ages of IG a or b, a1, a2 and IGm’s. The substitutions without informing patient or doc of all full knowledge can cause very unpleasant side effects. I’d had infusions monthly for 1-1/2 years before this reaction…substitution or bad handling in a hospital…I am not sure. BUT….I called the prescriptioned manufacturer, the FDA and my state medical board. Somehow that infusion clinics’ staffs got trained? They were closed during one month for two days…had to be that? After all that, the nurses would slyly tell me: we admitted one reaction last week, three the week before…etc. It was their way I think of telling me thank you. I quickly changed to home service after I got pharmacy records stating that I’d had substitution IG brands for 9 of 12 infusion sessions at that facility. IVIG infusions are not something you play with switching brands lightly? Such action can cause great damage!
You state that you hydrated well, but, caffeine before they get the line in can cause problems. Once that catheter is in, all is OK. If this was your first infusion and in a hospital? That all behaviour needs a ‘retraining’.. Another issue could be if the catheter wasn’t properly inserted.
I believe I had aseptic meniginitis on that infusion day….had they done the ‘proper protocol’ testings[blood tests] at that time I would have avoided a heap of unnecessary pain. If infusions need to be done over a long time, fine! Let it be a long time! Better safe than sorry, ya know?
IF it was a home nurse, call the nursing company and find out what their protocols/procedures are about infusion rates…many have clear policies to NOT go over X amount per hour. Ask for their policies in writing. Some nurses are like hairdressers? They get paid by the ‘heads’ they do, more heads, more bucks.
Cheryl is right, you have to put your own well-being first. Everyone else is on target about all other aspects. Those headaches tho, they add a new dimension of empathy for migraine sufferers tho, doesn’t it? Mine lasted over a week, and just walking in the house during that time brought spots before my eyes…It is NOT a pleasant feeling. Hope this helps?