Has anyone had IVIG Infusions for Neuropathy?
Anyone had success with IVIG infusions for idiopathic neuropathy ?
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Anyone had success with IVIG infusions for idiopathic neuropathy ?
Interested in more discussions like this? Go to the Neuropathy Support Group.
Sorry, I deleted my comment my neuropathy is autoimmune not idiopathic.
Sorry my comment posted twice.
You did not mention which IVIG therapy you are taking. Some of them cause a rash and recommend Benadryl.
I had my first infusion a week ago , I am slated for one a month for 4 months,
It took 3 hours , so far nothing happening,
shirley
I was told 4-8 weeks you will be able to see a difference by the pharmacist. The doctor told me six months so I am not sure who is right.
Having ivig now. I am always predosed with oral benedryl and solumedrol as well as tylenol. We changed to schedule to every two weeks to keep side effects down. It definitively helped with my headaches but I did not feel the same healing effects as I did with once a month. Thank you for your comment.
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1 ReactionI would look at your infusion rate and hydration. At the beginning it is more important that the rate is very slow. And super hydration the day before, day of and day after is also very important. If you don't have any sodium issues, eating salty snacks will keep more water in your system.
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1 ReactionYikes! That is a lot to deal with. I really hope it’s effective for you.
My dad had to take prednisone because of an inflammatory arthritis diagnosis (it’s unfortunately the first line treatment), and it is helpful but it can become a nasty drug the longer you take it.
Thanks for the info about IVIG for SFN. I realize this and yet, I dunno, at least between the neurologists I saw locally at an academic medical center and at two Mayo campuses, they really weren’t proponents of it.
I am afraid of gabapentin, Lyrica, amitriptyline, etc. So I’ve just been doing the best I can with PT and a handful of other treatments. But my symptoms are relatively “mild,” as compared to what they could be, which should be a good thing but of course it’s all frustrating to each of us in its own way.
How much water do you drink? My starting infusion is five days in a row. The next month is also 5 days. The pharmacist said they are going to take sic hours each. Just curious how much water.
VYVGART HYTRULO APPROVED BY FDA FOR CIDP