Last week, I had an infusion…
AnonymousJuly 8, 2007 at 10:24 pm
It is the first time I’ve not felt any difference? Should I be worried? Usually I feel some muscles well ‘relax’ and untie from this dreaded condition after my first hour of infusion, and this time I didn’t. I am feeling only a teeny bit better from the infusion….mostly that my mind is clearer, physically tho, negligible improvement…which it usually becomes after the pre-meds wear off. BUT…this time it’s different and I can’t put a finger on anything specific. I’ve been on the IVIG for 3 years…..only one time a major s/e…
I won’t be seeing my neuro for another 6 weeks…does anyone have any ideas?
Since I’ve not experienced PP, tho I did go straight to the IVIG and skipped the steroid route…any thoughts on possibilities in this quarter?
Has anyone else ever gone thru this kind of, I guess, a flare up? I’m sure you all have…It’s just that I did so well [with one exception] on the IVIG…PP really scares me? BUT IF IT WORKS/HELPS…I guess I’m game? Thank you all!
AnonymousJuly 8, 2007 at 11:05 pm
I have never really felt and “improvement” after an IVIg infusion. However, I have noticed the my symptoms have increased at a much slower rate. This CIDP can drive you up a wall. Just when you thing you know what’s going on, something changes.
I don’t think it’s time to worry. Wait a bit and see what some of the others have experienced..
AnonymousJuly 8, 2007 at 11:25 pm
We are all so different in regards to how we react to medicines. I know for
the last 10 years, the IVIG has helped…sometimes, I would notice within
an hour, that my fingers would open up and be less curled. Sometimes, it
would be 3 – 5 days before I would feel better. It really depends at what
level of weakness you are experiencing before the IVIG. Usually, I do 100grms. once a month over a 24 hour infusion at home…with a little pump
that allows me to go about without dragging around a huge Baxter pump
hooked up to a sockett. It sits in a backpack that my cat loves to sit on
all the time…lol.
Also, maybe the pharmaceutical brand was different this time…there are
several brands out there. I really wouldn’t worry, unless after about a week
you feel no different than before, then, call your neurologist. Good luck…
AnonymousJuly 9, 2007 at 9:55 pm
I did definitely have some ups and downs when I had infusions at a hospital…the constantly switched brands using those not prescribed and not informing either the neuro or me of the changes…I’d almost given up. So in the year I’ve had home infusions, there has been a consistency in the brand…that there was no noticible relief, relaxation of either the nerves or muscles was disconcerting. The effects have finally kicked in, thank goodness! I will be able to sleep tonight [unless-knock wood quick- we don’t have a power problem…
Seems as if half the country is under water or baking. At times I fear, both?
Again, thank you.
Miami Girl, does your cat sort of re-program the pump? I am trying to imagine that all…Since I have been trained by some very major cats, I believe it completely.
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