Small Fiber Neuropathy

Posted by kfrenc04 @kfrenc04, Feb 10, 2022

Are there any treatments available or trials for Small Fiber Neuropathy? My symptoms get worse every day. Thank you

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@jemock

It’s always interesting to me how many people think that small-fiber neuropathy is only the extremities because that’s the only kind that they’re aware of. Ugh.

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Yes and I agree it can be all over the more I am learning about this I understand that!

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@harley22

I too had a compound med done for my feet but I broke out with a measles type rash after a few days using it.
My foot doc told me to discontinue it.

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Go talk to the pharmacist that compounded it. He may have a solution for that. One of the ingredients might be the culprit. And he can possibly mix a smaller amount of a new prescription for you to try. There are a variety of “ recipes” for pain cream. The pharmacist will want to help you find a solution!

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@jemock

It’s always interesting to me how many people think that small-fiber neuropathy is only the extremities because that’s the only kind that they’re aware of. Ugh.

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Yes, mine is idiopathic length-dependent small fiber polyneuropathy. It’s definitely everywhere!

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Has any one been told to try
IVIG treatment to treat Sfn ?

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@julbpat

Go talk to the pharmacist that compounded it. He may have a solution for that. One of the ingredients might be the culprit. And he can possibly mix a smaller amount of a new prescription for you to try. There are a variety of “ recipes” for pain cream. The pharmacist will want to help you find a solution!

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spoke with the pharmacy that compounded the cream and they knew exactly which of the 5 ingredients was prob the culprit.
They will reach out to my doc and see about ordering another cream for me, and sending it at no cost to me.

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@dost

Has any one been told to try
IVIG treatment to treat Sfn ?

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I would love to know the answer to this as well
ANYONE ?..
IVIG helping SFN ???

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@roslyn2314

I would love to know the answer to this as well
ANYONE ?..
IVIG helping SFN ???

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@roslyn2314, There are a few other discussions that you might find helpful where members have posted about IVIG infusions for neuropathy.
--- IVIg Infusions for yet to be specially diagnosed autoimmune neuropathy: https://connect.mayoclinic.org/discussion/ivig-infusions-for-yet-to-be-specially-diagnosed-autoimmune-neuropathy/
--- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/

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@harley22

spoke with the pharmacy that compounded the cream and they knew exactly which of the 5 ingredients was prob the culprit.
They will reach out to my doc and see about ordering another cream for me, and sending it at no cost to me.

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Oh gosh! I love it when a suggestion is helpful! I’m a retired nurse, and I tend to think the way I did while working - how can we fix this problem, and help the patient. So glad you found a quick solution.

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@johnbishop

@roslyn2314, There are a few other discussions that you might find helpful where members have posted about IVIG infusions for neuropathy.
--- IVIg Infusions for yet to be specially diagnosed autoimmune neuropathy: https://connect.mayoclinic.org/discussion/ivig-infusions-for-yet-to-be-specially-diagnosed-autoimmune-neuropathy/
--- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/

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@johnbishop
Thank you for the IVig information. I am benefitting from my IVig with regards to my neuropathy even though that is not the reason I receive the infusion. Who knew I would look forward to having an infusion. Five years ago I would have been on the floor passed out (not from laughing) if someone explained the process (needles etc...).

JFN

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@julbpat

Yes, mine is idiopathic length-dependent small fiber polyneuropathy. It’s definitely everywhere!

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Mine as well. All over my body pretty much up to the top of my shoulders and trunk. As well as legs and arms feet and hands.

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