Hmmm, I have the last several months started getting these red spots on my skin. I wonder now if it is the same type rash you mentioned. I noticed the first couple at my hairline and over one shoulder blade. Then I had a few around and just under my neck on my chest. This has been weeks and I do not recall if they started at the time of infusion, but could have been. I have sleep apnea and have had a blister on the bridge of my nose where the CPAP mask fits that seems to take a long time to heal, so now I am thinking it is one of those red spots that gets irritated whenever I go back to using the mask after taking a break for it to "heal." This morning I awoke and have more red spots on my upper and lower chest, in my arm pits, and in my pubic hair area. Sometimes they itch, but not always - especially if I do not rub them. I could be wrong, but I am concluding that they are showing up in hair follicles (or where there were hair follicles). I could be wrong. Does this sound in anyway similar to your rash? When I got my annual from my primary doc about a month ago, he said the few I had at that time were just due to being 87 years of age. I'm not sure about that explanation and need more answers for the cause of these spots and how to get rid of them, if available.
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
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
@anoyymous123, Just a tip that you might want to reply to your email notification using the View & Reply button at the bottom of the email notification and not just reply to the email itself. When you use the View & Reply button, it takes you directly to the discussion so that you can type your reply into a Reply or Post Comment field. If you you just click Reply to the actual email you get all of the extra garbage characters from your email device and program which makes it extremely difficult to read your reply or post in context with the current discussion.
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.
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.
Not all will help with the neuropathy it’s not their specialty. He is starting me on IVIG therapy next week for my autoimmune severe axonal sensorimotor peripheral polyneuropathy
Small fiber neuropathy
Cardiac autonomic neuropathy
We are starting 5 consecutive days the infusions last six hours a day. Then when I start having problems we will change it up but 5 days every three months. My neurologist recommended him they were friends. The one that passed away he already had IVIg therapy approved but the rest of his practice would not give it to me. He has watched me rheumatologist struggle to find a neurologist for three years. My neuropathy has gotten to the point where my husband sometimes has to feed me my hands shake so bad from the motor neuropathy and I have to have a cup with a lid otherwise it spills all down the front of my clothes. I tried to do dishes my hands were shaking dropped a knife and it went into my foot. I pulled out the knife foot bleed cc a lot but I am really struggling. The pharmacist said that this might reverse some of the nerve damage. It is used for CIDP.
Panzyga is what we are going with
Not all will help with the neuropathy it’s not their specialty. He is starting me on IVIG therapy next week for my autoimmune severe axonal sensorimotor peripheral polyneuropathy
Small fiber neuropathy
Cardiac autonomic neuropathy
We are starting 5 consecutive days the infusions last six hours a day. Then when I start having problems we will change it up but 5 days every three months. My neurologist recommended him they were friends. The one that passed away he already had IVIg therapy approved but the rest of his practice would not give it to me. He has watched me rheumatologist struggle to find a neurologist for three years. My neuropathy has gotten to the point where my husband sometimes has to feed me my hands shake so bad from the motor neuropathy and I have to have a cup with a lid otherwise it spills all down the front of my clothes. I tried to do dishes my hands were shaking dropped a knife and it went into my foot. I pulled out the knife foot bleed cc a lot but I am really struggling. The pharmacist said that this might reverse some of the nerve damage. It is used for CIDP.
Panzyga is what we are going with
I really hope it’s helpful for you. Please keep us updated!
Something similar happened to me; the original neurologist who recommended it left the practice and none of the remaining neurologists were willing to go through the arduous process of ordering it and they all said they weren’t familiar with using it for my conditions. I have FGFR3 positive small fiber neuropathy but the antibody test is considered still experimental. Even the neurologists at Mayo either weren’t familiar or dismissed it. Thankfully, my symptoms have improved somewhat and at long last, I found a new neurologist wiling to try it, but not after exhausting all other treatment options too. So I’ll just have to see.
I hope the infusions go well with no reactions, fingers x’d.
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/
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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
@anoyymous123, Just a tip that you might want to reply to your email notification using the View & Reply button at the bottom of the email notification and not just reply to the email itself. When you use the View & Reply button, it takes you directly to the discussion so that you can type your reply into a Reply or Post Comment field. If you you just click Reply to the actual email you get all of the extra garbage characters from your email device and program which makes it extremely difficult to read your reply or post in context with the current discussion.
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.
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.
Neuromuscular Neurologist but I have had problems finding a good one after mine passed away. A rheumatologist is helping me.
How is he helping? Got an appt with one next week
Not all will help with the neuropathy it’s not their specialty. He is starting me on IVIG therapy next week for my autoimmune severe axonal sensorimotor peripheral polyneuropathy
Small fiber neuropathy
Cardiac autonomic neuropathy
We are starting 5 consecutive days the infusions last six hours a day. Then when I start having problems we will change it up but 5 days every three months. My neurologist recommended him they were friends. The one that passed away he already had IVIg therapy approved but the rest of his practice would not give it to me. He has watched me rheumatologist struggle to find a neurologist for three years. My neuropathy has gotten to the point where my husband sometimes has to feed me my hands shake so bad from the motor neuropathy and I have to have a cup with a lid otherwise it spills all down the front of my clothes. I tried to do dishes my hands were shaking dropped a knife and it went into my foot. I pulled out the knife foot bleed cc a lot but I am really struggling. The pharmacist said that this might reverse some of the nerve damage. It is used for CIDP.
Panzyga is what we are going with
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3 ReactionsI took IVIG therapy from age 10-18.
It made a huge difference in my life.
I really hope it’s helpful for you. Please keep us updated!
Something similar happened to me; the original neurologist who recommended it left the practice and none of the remaining neurologists were willing to go through the arduous process of ordering it and they all said they weren’t familiar with using it for my conditions. I have FGFR3 positive small fiber neuropathy but the antibody test is considered still experimental. Even the neurologists at Mayo either weren’t familiar or dismissed it. Thankfully, my symptoms have improved somewhat and at long last, I found a new neurologist wiling to try it, but not after exhausting all other treatment options too. So I’ll just have to see.
I hope the infusions go well with no reactions, fingers x’d.
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/
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Like -
Helpful -
Hug
3 Reactions