I had IVig infusions for over 2 years but had to stop in February because I couldn't drive to the infusion center. I had infusions for 2 consecutive days every 4 weeks. I couldn't sense any change in my CIDP symptoms, but I suppose it's possible that it was helping to slow down the progression. I take 10mg daily of Prednisone for that reason.
I recently had a 4 week trial of Hizentra, and the second week the burning pain was gone. It stayed gone until the week after the last infusion (subcutaneous). Unfortunately my insurance denied it and has me trying Gamunex. I had 2 months of IVig infusions with the same lack of results as before with Privigin, so I convinced my neurologist to switch to weekly sub Q infusions. They start next week. I think that it's possible that having a weekly infusion keeps the medication in my system. I wish I had tried it long ago.
There are some people who have a reaction to ig, but I never have. The nurse asks every time if I want an antihistamine or Tylenol, but I take both every morning already.
Hizentra gave me a free 4 week trial of the sub Q infusions, and paid for a nurse to come and train me. I still can't drive post surgery, so I'm glad that it's possible for me to get the treatments at home, even if it isn't for the medication that was the first one to stop the pain after more than ten years of searching. That's life in the Medicare system.
I have been on IVIG monthly for 2 years. It was prescribed because of an autoimmune related sudden and severe peripheral neuropathy, affecting sensation,
balance, and mobility. As I understand it from my neurologists, IVIG stops further inflammation and damage to the peripheral nerves, and therefore allows physical therapy to build up balance and strength. That has happened slowly over these two years. I still use a walker and wheelchair to get around, and the pain of early peripheral neuropathy has stopped.
I have learned to accept this big bump in the road of my plans for my “golden years.” I still have many things working well for me, and hope that for you, too.
Out of curiosity what state do you live in? If Texas can you give me the neurologist name. I am having severe issues and mine is autoimmune neuropathy. I have had so much fluid on me I can hardly walk. I can’t get into my shoes.
https://www.foundationforpn.org/support/find-a-doctor/#
I am in Rhode Island, but I went into the Foundation for Peripheral Neuropathy website which has neurologists familiar with peripheral neuropathy listed by state. Texas has a number of listings. While FPN does not endorse these doctors, they are a place to start your research there. Best of luck in finding a good neurologist to treat you and get you some relief!
My neurologist said i have CIPD. Talked into having 5 days of IVIG treatments. No relief only
a rash over entire body following IVIG. Now on Dupixent No more IVIG for me.
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.
IvIg has not worked for me - it seems to be making my pain worse. I am very disappointed, but between the increasing pain and side effects (nausea, gut pain, bad insomnia, bad restless leg syndrome), I felt I was going out of my mind. In the interim, I have learned that I have very low iron (ferritin and % iron saturation), even though my hematocrit and hemoglobin are normal. Iron studies are something that is not covered by routine complete blood count or chemistries - you have to ask for it specifically. There are medical publications that demonstrate that low ferritin and/or % iron saturation can cause restless leg syndrome and/or neuropathy. So now I'll try iron infusions.
https://www.foundationforpn.org/support/find-a-doctor/#
I am in Rhode Island, but I went into the Foundation for Peripheral Neuropathy website which has neurologists familiar with peripheral neuropathy listed by state. Texas has a number of listings. While FPN does not endorse these doctors, they are a place to start your research there. Best of luck in finding a good neurologist to treat you and get you some relief!
I have neuropathy due to a neck infusion and a spinal web removal. My legs burn I have lots of numbness in my back and arms. I take 1800 milligrams of gabapantantem a day. It dose not work at all.
Any suggestions
I take 2700 mg Gabapentin and in my 3rd month. It helps. I smoke marijuana to enhance and I am trying Cat's Claw, a vine from the Amazon that has helped with arthritis and neuropathy for hundreds of years.
I have neuropathy due to a neck infusion and a spinal web removal. My legs burn I have lots of numbness in my back and arms. I take 1800 milligrams of gabapantantem a day. It dose not work at all.
Any suggestions
The Foundation for Peripheral Neuropathy also has a list of different treatments including complementary and alternative treatments that you might want to look through - https://www.foundationforpn.org/treatments/.
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I had IVig infusions for over 2 years but had to stop in February because I couldn't drive to the infusion center. I had infusions for 2 consecutive days every 4 weeks. I couldn't sense any change in my CIDP symptoms, but I suppose it's possible that it was helping to slow down the progression. I take 10mg daily of Prednisone for that reason.
I recently had a 4 week trial of Hizentra, and the second week the burning pain was gone. It stayed gone until the week after the last infusion (subcutaneous). Unfortunately my insurance denied it and has me trying Gamunex. I had 2 months of IVig infusions with the same lack of results as before with Privigin, so I convinced my neurologist to switch to weekly sub Q infusions. They start next week. I think that it's possible that having a weekly infusion keeps the medication in my system. I wish I had tried it long ago.
There are some people who have a reaction to ig, but I never have. The nurse asks every time if I want an antihistamine or Tylenol, but I take both every morning already.
Hizentra gave me a free 4 week trial of the sub Q infusions, and paid for a nurse to come and train me. I still can't drive post surgery, so I'm glad that it's possible for me to get the treatments at home, even if it isn't for the medication that was the first one to stop the pain after more than ten years of searching. That's life in the Medicare system.
Jim
Out of curiosity what state do you live in? If Texas can you give me the neurologist name. I am having severe issues and mine is autoimmune neuropathy. I have had so much fluid on me I can hardly walk. I can’t get into my shoes.
https://www.foundationforpn.org/support/find-a-doctor/#
I am in Rhode Island, but I went into the Foundation for Peripheral Neuropathy website which has neurologists familiar with peripheral neuropathy listed by state. Texas has a number of listings. While FPN does not endorse these doctors, they are a place to start your research there. Best of luck in finding a good neurologist to treat you and get you some relief!
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.
IvIg has not worked for me - it seems to be making my pain worse. I am very disappointed, but between the increasing pain and side effects (nausea, gut pain, bad insomnia, bad restless leg syndrome), I felt I was going out of my mind. In the interim, I have learned that I have very low iron (ferritin and % iron saturation), even though my hematocrit and hemoglobin are normal. Iron studies are something that is not covered by routine complete blood count or chemistries - you have to ask for it specifically. There are medical publications that demonstrate that low ferritin and/or % iron saturation can cause restless leg syndrome and/or neuropathy. So now I'll try iron infusions.
Thank You! Last time I looked they did not have any close to where I live and now they do.
Glad to read that! Best of luck with finding a good neurologist nearby.
I have neuropathy due to a neck infusion and a spinal web removal. My legs burn I have lots of numbness in my back and arms. I take 1800 milligrams of gabapantantem a day. It dose not work at all.
Any suggestions
I take 2700 mg Gabapentin and in my 3rd month. It helps. I smoke marijuana to enhance and I am trying Cat's Claw, a vine from the Amazon that has helped with arthritis and neuropathy for hundreds of years.
Good luck
Cheers, Jill
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1 ReactionWelcome @bellabell1, Sorry to hear the gabapentin isn't helping. There are discussions that members have shared experience with burning feet and legs. Here's a link to the discussions and comments - https://connect.mayoclinic.org/search/?search=burning+feet+%2Bwhat+helps.
The Foundation for Peripheral Neuropathy also has a list of different treatments including complementary and alternative treatments that you might want to look through - https://www.foundationforpn.org/treatments/.