Thanks for your question about IVIG. I had my first ivig infusion last month for small fiber neuropathy and systemic lupus. I didn’t expect immediate results but also didn’t expect the side effects I experienced for 6 days after. I am doing another two day infusion this week with premeds to counteract the horrible headache and nausea. I would like to hear from anyone who had these side effects and anything that helped.
At first my skin doctor told his assoc that i have scabies. test proved no scabies.later showed him internet document thatfor some IVIG causes excema type rash now been on dupixent for over a year. Skin cleared up after a few months not sure whether dupixnet did it or not, anyway will tell hem end of month no more dupixnet
I hate when doctors just chalk things up to old age. Seems so dismissive. My husband had the same infusions but no red spots. Did the doc send you to a dermatologist? If not I would ask for a referral. The infusions did not help my husband but then they don’t really know what causes his neuropathy from mid chest to feet.
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.
Thanks for your question about IVIG. I had my first ivig infusion last month for small fiber neuropathy and systemic lupus. I didn’t expect immediate results but also didn’t expect the side effects I experienced for 6 days after. I am doing another two day infusion this week with premeds to counteract the horrible headache and nausea. I would like to hear from anyone who had these side effects and anything that helped.
I 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.
IVIG therapy is used in treating small fiber neuropathy.
Third one down immune globulin show the doctors this that it is considered a treatment. See below website. They also have a bunch of webinars to listen to. It’s under prescription therapy. Since, I have had avascular necrosis and osteoporosis in both hips from cortisone therapy is not an option for me. I have had four left hip replacements and an actebulum fracture on top of fracturing my pubic ramus. Last summer fractured T7 (in my back) so the doctors are now limiting how much cortisone I get. One side effect from the cortisone I have is glucose levels go high. I am not diabetic.
I hope it works also. I am allergic to lyrica and neurotin so I can’t take either one. My kidneys shut down and can’t urinate then I swell up huge. My mouth itch’s like crazy and I break out in hives. It has sulfa and I can’t take anything with sulfa, sulfites or sulfonamides. https://www.foundationforpn.org/treatments/
Yikes! 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.
I 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.
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.
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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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Hug
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.
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