Small Fibre Neuropathy, looking for treatments apart from gabapentin or pregabelin.

[He-en]

In the past 2 years I’ve had cancer ( 2 ops and radiotherapy- no chemo) and have been also diagnosed with small fibre neuropathy. My main symptom being itching/stinging legs and arms and profuse sweating if I doing small things like hoovering!! I’ve had those symptoms for about 7 years. They are at their worst in the mornings or if I change temperature. I can not tolerate the cold , I have to heat my clothes before putting them on .

My symptoms improve as the day goes on. I know that my SFN diagnosis is correct as nerve biopsies proved it but I can’t help thinking something else is at play here to do with temperature regulation.

In the course of investigations, I was put on HRT as it was thought that I might have post menopausal pruritis. I had a mirena coil fitted as the HRT Made me bleed . The progesterone caused me to feel very depressed and my neuropathy symptoms went from 0 to 60. The gynae said he’d never met anyone so hormone sensitive! Within the year I had developed oestrogen positive cancer .

My cancer is under control but the SFN is driving me nuts. It’s so uncomfortable/irritating and at times painful. I read a research paper that said some people have benefitted from steroids? Has anyone else tried them for SFN?

I will not take pregabalin or gabapentin as I couldn’t bear the side effects. I need to stay focussed as I do a lot of acting and singing. I need to be able to learn scripts etc. And I know 2 people who have had brain fog and memory issues with these drugs.

My brother now has cancer and iwe will be looking after him. We also have 6 grandchildren. Managing my symptoms, my interests, and other responsibilities is becoming a nightmare.

Has anyone else had these symptoms with SFN and/or tried steroids to help?

Thank you.

[Hidden]

Sorry that you have this small fibre neuropathy too. I have the same and mine had progressed to affect my entire body including my face.

Mine isn’t from chemo or cancer it’s from Sjögren’s disease - a progressive autoimmune disease which affects me in many different ways - much like MS in my case.

Like you I couldn’t tolerate Pregabalin or Amitriptyline or others. I did benefit from steroids for a period of six months but that may be because mine was an immune mediated neuropathy rather than a response to a treatment?

In the US I believe Sjögren’s sufferers with SFN are given infusions of IViG to good effect and some have benefited from Rituximab. Might be worth looking into?

I know that when I was previously on Methotrexate injections for Rheumatoid Arthritis someone told me that the small fibre neuropathy is sometimes a response to this as a kind of chemo drug and theirs had eventually resolved so maybe you’ll be lucky too?

For me mine is progressing into numbness now and my neurologist says numbness is death of nerves so irreversible.

Fingers crossed yours resolved over time.