how do you know if ivig is working?
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November 9, 2011 at 12:25 pm
i’m sitting in a chair getting my 4th infusion right now and am wondering what to look for to tell if ivig is working for me. so far, i don’t think i’ve felt anything, but it’s probably too early, so i’m not too worried, but i would like to know what i might expect to happen first …
meanwhile, i got an allard carbon-fiber afo yesterday and, as far as foot drop goes, it’s the bomb!
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November 9, 2011 at 4:37 pm
Hubby has atrophied weak right hand and forearm and drop foot. Mid way through his first IVIG loading dose in 2007, he could feel some hand strength returning. Prior to the IVIG he couldn’t turn a key, door knob, or use eating utensils. He was one of the lucky ones that showed good results almost immediately. The IVIG maintains his hand strength, but the permanent damage and atrophy is still present so in effect he will have a weak hand and foot forever. But the IVIG keeps him from losing more function. I have read that many people don’t show response until after several rounds of IVIG. Good luck there.
Laurel -
November 9, 2011 at 5:40 pm
Thanks for the responses. My hands are fine, but my leg muscles have atrophied and I have foot drop. But no one at the hospital or anywhere is doing any testing to see what my response is. My first round of ivig will be ten treatments, then I’ll go see the dr, and he’ll evaluate and see if he can detect changes.
So what if nothing’s gotten better … but nothing’s gotten worse? In other words, if ivig isn’t making improvement that doesn’t mean it’s not keeping things from getting worse. But how could one ever know that?
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November 9, 2011 at 8:49 pm
It’s strange because when Emily was in the hospital the 1st time she couldn’t walk, jump, run, feed herself, etc. When she left the hospital, after 2 IVIG treatments, she could do all of the above.
So I guess IVIG reacts differently with each person. I think quite a few people feel nothing at first but they start to feel better after a few treatments. I personally believe those who do not see any improvement right away might be better off to receive a few loading doses before moving on to maintenance doses.
Kelly
PS, make sure you are hydrating!
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November 9, 2011 at 9:15 pm
I get IVIG monthly.
I feel weaker as the month goes on and more tired.
Just after IVIG I feel like crap for 2 or 3 days then I feel almost normal, or I guess my new normal.
I can’t do what I used to but I try to enjoy what I am able to do.
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November 10, 2011 at 8:14 am
You’re right, and I suppose I’ll just to wait and see. In my case, so far at least, knock on wood, I have suffered no real side effects from ivig. a little light headedness at time of treatment, but other than that, nada. in fact, i’ve upped and gone surfing the day after a treatment. let’s hope it stays that way!
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