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Has anyone had IVIG Infusions for Neuropathy?
Neuropathy | Last Active: Oct 3 7:57am | Replies (491)Comment receiving replies
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.
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It's quite the challenge to diagnose with so many symptoms! I'm thankful for my blanket lifter. It's set up at the foot of the bed and creates a tent. My problem is that anywhere my feet make contact with something they hurt after a few seconds. If I lie on my back my heels hurt. On my side, the sides of my feet hurt. Sometimes I have to dangle them off the bed to get relief.
Have you talked with a dermatologist about the scaly skin, or maybe a pharmacist would have a suggestion. Sometimes they know more than the doctors.
I understand how hard it can be to figure out how or if different things are related, especially with neuropathy. When I talk with doctors, it seems like they have an easy answer - "it's probably related to your pn." I wonder sometimes if they just say that rather than pursue another possible cause. It's a quick way to get me out the door.
The IVig took several months to see any change. The neurologist told me that it would be at least 4 months. If my feet start hurting worse, and it's the week before the next infusion, that tells me something. But pain can be so hard to be precise about. We just do what we can to manage it, mostly a list of little things that help.