I need studies that support IVIG in fine fiber neuropathy

[men100]

Hello, they have accepted my diagnosis of fine fiber neuropathy in my public hospital and they ask me to take studies in which there are cases of people who improve or are cured with intravenous immunoglobulins. In my country the use of immunoglobulins is for compassionate use only. Can you help me find those studies?

Thank you!

 

[Joy&K0$]

Here are a few. https://www.ncbi.nlm.nih.gov/pubmed/?term=small+fiber+neuropathy+ivig

Also look up Annie Oaklander, who collaborates with David Systrom of iCPET fame: https://www.ncbi.nlm.nih.gov/pubmed/?term=small+fiber+neuropathy+oaklander

 

[men100]

Here are a few. https://www.ncbi.nlm.nih.gov/pubmed/?term=small+fiber+neuropathy+ivig

Also look up Annie Oaklander, who collaborates with David Systrom of iCPET fame: https://www.ncbi.nlm.nih.gov/pubmed/?term=small+fiber+neuropathy+oaklander

Thank you, but those only work, I think, these:

How We Treat Autoimmune Small Fiber Polyneuropathy with Immunoglobulin Therapy. (This does speak of significant improvement of the patients undergoing the study).

Intravenous immunoglobulin therapy for small fiber neuropathy: study protocol for a randomized controlled trial (this is for pain and the study is apparently not finished).

I have no pain, my affected fine fibers are autonomous. I have POTS and Chronic Fatigue Syndrome.

Studies that treat autoimmune POTS with IVIG are also helpful.

I have found almost none, but English is not my mother tongue.

 

[ryan31337]

I don't know if you have public or private healthcare @men100 , but be aware IVIg is incredibly expensive and will probably require repeat treatments, maybe indefinitely.

In my country's public healthcare system they will only use IVIg in extreme cases of diseases where IVIg is proven to be effective (not currently proven for SFN). It has to go through several stages of funding/approval and I've been told there is no chance to get it for a diagnosis of SFN alone.

 

[men100]

@ryan31337

Hello, I am Spanish and in my public hospital they will try to approve the treatment the committee that decides these cases. That is why they ask me to take all possible studies with cases of improvement to support the request.

I have tried 45gr. of IVIG privately. It is very expensive, indeed. That is why they are going to try to give it to me in the public hospital since they have sat me well.

 

[ryan31337]

Oh that's good news, I wish you the best of luck with your application. Please let us know how it goes

 

[Dakota15]

@men100 @Joy&K0$ , is it just my computer or is there any reason why these studies won't load?

I'm looking for IVIG studies to support POTS/Dysautonomia, SFN as well...