Yes I did. This was in probably 2016. I was seeing a specialist at The University of Chicago who recommended it and thought it would cure it or at the very least stop the progression. I did them for a year without any improvement. At the time they believed that my SFN was due to an autoimmune disease but they now think it’s idiopathic. Maybe if it had been from autoimmune disease it would have helped.
Dr. Anne Oaklander at Mass General just equates idiopathic with "idiot" , not knowing the cause, in her 2017 You Tube presentation on SFN which I also have and diagnosed at Cleveland Clinic. Think mine dates back to when I had a bad reaction from the Moderna booster shot. 5 months of steroids and then 10 months of Dupixent. The SNF continued from that point on in my mis section, legs and arms but not feet or hands like most. I had 9 ALA IVs but didn't help. approved in Germany for diabetic neuropathy and I am do not have diabetes. Trying to research if Dr. Oaklander has made advancements in SNF which she has been studying for some time now and think those nerves can be regenerated,
Dr. Anne Oaklander at Mass General just equates idiopathic with "idiot" , not knowing the cause, in her 2017 You Tube presentation on SFN which I also have and diagnosed at Cleveland Clinic. Think mine dates back to when I had a bad reaction from the Moderna booster shot. 5 months of steroids and then 10 months of Dupixent. The SNF continued from that point on in my mis section, legs and arms but not feet or hands like most. I had 9 ALA IVs but didn't help. approved in Germany for diabetic neuropathy and I am do not have diabetes. Trying to research if Dr. Oaklander has made advancements in SNF which she has been studying for some time now and think those nerves can be regenerated,
My latest diagnosis is idiopathic PN, I've had the symptoms for 16 years. I had Gamunex-C administered at the hospital, Hizentra administered at home and plasmapheresis at the hospital. None of the above worked.
Got very sick after 6 months of Gamunex-C (neurologist, cardiologist, pulmunologist and dermatologist at the same time), the final diagnosis was, let's hope it won't come back again.
Yes, I was given IVIG on two different occasions at two different dosages. Neither time did I get any benefit but everybody’s different so it could be a benefit to you
From my prior comment I'd really like to emphasize that I believe that if the root cause of your small fiber neuropathy is autoimmune (for example Sjogren's disease) that IVIG might be beneficial. If it is due to another cause, chemical damage from chemotherapy or other drug injury or non-autoimmune types of diabetes it might not help. With IVIG you're literally flooding your immune system with the antibodies of thousands of donors whose bodies have encountered all types of viruses and infections and likely fought them successfully in order to boost your own immune response. I think it's a reasonable course of action if you have a diagnosed autoimmune disease or possibly even if your SFN is caused by a tick borne disease (they can be notoriously difficult to document). I DID have several positive ANAs and other red flags for autoimmune disease which was why IVIG was recommended. I have also had many ANAs that are negative or inconclusive to a specific disease both before and after so in my case that was probably coincidental to the SFN. I really wish you the best. I have had this 2006 (diagnosed 2008) and it has taken a HUGE toll on my life and completely reshaped my idea of what my "golden years" will be like. But I try to accept as best as I can and physically do as much as I can, which always makes me feel better even though the soreness lasts longer than it used to. I don't give up and if you shouldn't either.
I just wanted to pass along my thoughts on the subject. In my mind I *have* to try everything that might possibly help because if I don't I'll never know if it would have worked and will always wonder. I have had ALL the genetic testing and infectious disease testing out there and nothing is standing out as a cause. So we keep on. I just really wanted you to have an understanding of expectations before you do it.
Yes, I was given IVIG on two different occasions at two different dosages. Neither time did I get any benefit but everybody’s different so it could be a benefit to you
@jedge54
From what I understand - for IVIG to be effective you must have an infusion once a month - every month to get relief.
I presently get an infusion every other month for a blood disease but I’m looking in to increasing the doses.
From AI;
Standard IVIG Dosing for Neuropathy
In the treatment of inflammatory neuropathies like CIDP, the maintenance dose of IVIG is commonly given every 3 to 6 weeks.
Getting IVIG monthly is a sound step to improve refractory neurological symptoms, but it requires full coordination and approval from your medical team.
October 8, 2025
Hello,
I have been receiving IVIG infusions since January 2025 and I can tell you it's making a difference. I feel better and my skin is clear since then. This is a major leap in my well being and quality of life.
For reference: I have PN along with CTCL, Cutaneous T cell lymphoma. My condition is Sezary Syndrome.
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Yes I did. This was in probably 2016. I was seeing a specialist at The University of Chicago who recommended it and thought it would cure it or at the very least stop the progression. I did them for a year without any improvement. At the time they believed that my SFN was due to an autoimmune disease but they now think it’s idiopathic. Maybe if it had been from autoimmune disease it would have helped.
-
Like -
Helpful -
Hug
1 ReactionDr. Anne Oaklander at Mass General just equates idiopathic with "idiot" , not knowing the cause, in her 2017 You Tube presentation on SFN which I also have and diagnosed at Cleveland Clinic. Think mine dates back to when I had a bad reaction from the Moderna booster shot. 5 months of steroids and then 10 months of Dupixent. The SNF continued from that point on in my mis section, legs and arms but not feet or hands like most. I had 9 ALA IVs but didn't help. approved in Germany for diabetic neuropathy and I am do not have diabetes. Trying to research if Dr. Oaklander has made advancements in SNF which she has been studying for some time now and think those nerves can be regenerated,
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1 Reaction@clutch541
That’s quite a story but, did you have any IVIG infusions?
Tx. B.
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1 ReactionHello,
My latest diagnosis is idiopathic PN, I've had the symptoms for 16 years. I had Gamunex-C administered at the hospital, Hizentra administered at home and plasmapheresis at the hospital. None of the above worked.
Got very sick after 6 months of Gamunex-C (neurologist, cardiologist, pulmunologist and dermatologist at the same time), the final diagnosis was, let's hope it won't come back again.
Don Pedro
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1 ReactionYes, I was given IVIG on two different occasions at two different dosages. Neither time did I get any benefit but everybody’s different so it could be a benefit to you
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Helpful -
Hug
1 ReactionFrom my prior comment I'd really like to emphasize that I believe that if the root cause of your small fiber neuropathy is autoimmune (for example Sjogren's disease) that IVIG might be beneficial. If it is due to another cause, chemical damage from chemotherapy or other drug injury or non-autoimmune types of diabetes it might not help. With IVIG you're literally flooding your immune system with the antibodies of thousands of donors whose bodies have encountered all types of viruses and infections and likely fought them successfully in order to boost your own immune response. I think it's a reasonable course of action if you have a diagnosed autoimmune disease or possibly even if your SFN is caused by a tick borne disease (they can be notoriously difficult to document). I DID have several positive ANAs and other red flags for autoimmune disease which was why IVIG was recommended. I have also had many ANAs that are negative or inconclusive to a specific disease both before and after so in my case that was probably coincidental to the SFN. I really wish you the best. I have had this 2006 (diagnosed 2008) and it has taken a HUGE toll on my life and completely reshaped my idea of what my "golden years" will be like. But I try to accept as best as I can and physically do as much as I can, which always makes me feel better even though the soreness lasts longer than it used to. I don't give up and if you shouldn't either.
I just wanted to pass along my thoughts on the subject. In my mind I *have* to try everything that might possibly help because if I don't I'll never know if it would have worked and will always wonder. I have had ALL the genetic testing and infectious disease testing out there and nothing is standing out as a cause. So we keep on. I just really wanted you to have an understanding of expectations before you do it.
-
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Helpful -
Hug
2 Reactions@jedge54
From what I understand - for IVIG to be effective you must have an infusion once a month - every month to get relief.
I presently get an infusion every other month for a blood disease but I’m looking in to increasing the doses.
From AI;
Standard IVIG Dosing for Neuropathy
In the treatment of inflammatory neuropathies like CIDP, the maintenance dose of IVIG is commonly given every 3 to 6 weeks.
Getting IVIG monthly is a sound step to improve refractory neurological symptoms, but it requires full coordination and approval from your medical team.
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1 Reaction@solobeee1
No I didn't have any of those and not recommended by the neurologist I went to.
October 8, 2025
Hello,
I have been receiving IVIG infusions since January 2025 and I can tell you it's making a difference. I feel better and my skin is clear since then. This is a major leap in my well being and quality of life.
For reference: I have PN along with CTCL, Cutaneous T cell lymphoma. My condition is Sezary Syndrome.
Be well,
Martin
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1 Reaction@solobeee1 and others, you may also be interested in these related discussions:
- IVIg Infusions for autoimmune neuropathy: https://connect.mayoclinic.org/discussion/ivig-infusions-for-yet-to-be-specially-diagnosed-autoimmune-neuropathy/
- Has anyone had IVIG Infusions for Neuropathy? https://connect.mayoclinic.org/discussion/ivig-infusions/
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