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Has anyone had IVIG Infusions for Neuropathy?
Neuropathy | Last Active: Oct 3 7:57am | Replies (491)Comment receiving replies
@stwalker717 I wonder if you were given Tylenol and Benadryl before each infusion. That's standard procedure for the nurses where I have mine done. I take them every morning anyway, so they don't have to mess with them for me. I've never had any side effects from the infusions myself.
About the inevitability of a wheelchair - I don't think that sf neuropathy should necessarily indicate it. Did your neurologist mention autonomic neuropathy? If that's present, you'd certainly expect any number of problems as it progresses, probably noticeable weakness in your arms and legs to begin with. That's more debilitating than sfpn, in my experience. I'm glad that I test only as very early AN, so I don't have significant issues yet.
My neurologist has had me take 10mg of Prednisone for a few years now, with the hope or expectation that it will slow down the progression.
Some non-prescription things that help me: a blanket lifter on my bed to keep the bedding off my feet, soaking my feet in cold tap water, lidocaine cream 5% (far less expensive online than prescription - $20 vs. $150 not covered by Medicare), shoes that are larger than my former size to allow for cushion insoles and more room for my toes, loose fitting socks - diabetic socks, don't stand still, but keep moving, sometimes a pillow under my feet helps, ice. Other people have lists of more things to try.
Just a few of my random thoughts after reading your post.
Take care of yourself.
Jim
Replies to "@stwalker717 I wonder if you were given Tylenol and Benadryl before each infusion. That's standard procedure..."
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They do give me Benadryl, Singular, and Tylenol before my infusions. I do not take any of these daily on my own other than an occasional tylenol for headache or pains. no mention of any autonomic suspicions yet but since the infusions i have been very cold, tired, not sleeping very well, food tastes different, things smell different, and my stomach is weird.. We tried low dose prednisone a few years back. I take 15 mg of meloxicam daily which works wonders but is not good for your Kidneys long term. Toes take a beating from bed covers makes them feel like I have gout. Biggest issu currently is a bumpy scaly dry rash that started on my arms and across my shoulders which goes crazy with itching and seems to come on in the evenings. I where soft bigger Addidas sneakers, dislike tight socks or socks period and use a people between my legs. I don't know if these infusions are helping or not. They seem to be helping the small outer nerves. Some days are good some bad.. in the beginning the nerves seemed to release the muscle tension which let a lot of things free, now I am just not sure where aai am and my blood counts are low and God know where my Autoimmune system numbers are they aniT score was 1/360. nobody seems to kno crap about all this stuff yet. Neurologist know Neurology, primary care are generalists, takes weeks to get to a specialist and which one, a friend works in a research lab that is your best bet, that and these chat room I think.