My story

The story of my autoimmune small fiber neuropathy

Click on these links (in red) starting from the top to read my story chronologically

I'm still working on writing everything down, so some bits of my story are still missing (that's the black bits you can't click on). Stay tuned and feel free to subscribe if you don't want to miss a post.😉

My neurologists have called my type of autoimmune small fiber neuropathy (SFN) 'relapsing remitting', because I've had 3 episodes so far, but also periods in between where I was symptom free without treatment. 

Apparently, that's a rare form of SFN, as most patients either have continuous symptoms or only one episode. So that's why my story is separated into 3 episodes. 

Episode 1 in 2014

• My neuropathy symptoms started all of a sudden in 2014, after a respiratory tract infection.
• My first GP visit, one week into my symptoms was not very informative.
• My GP referred me to a neurologist, who turned out to be very unhelpful.
• After I convinced my GP that the neurologist was not helpful, we managed to get an appointment with a great neurologist. 
• He then started diagnostic testing, but all blood tests as well as an MRI came back normal.
• Next step, I had a spinal tap done, which also came back normal, but gave me the most miserable headache for a week.
• Finally, I had a skin punch biopsy and autonomic function testing done.
• We then started experimental high-dose oral prednisone treatment, which  got me into remission for almost 4 years.

Episode 2 in October 2017

• Neuropathy came back, all of a sudden after a respiratory tract infection in 2017, while I was living abroad.
• I had to find my way around in a different health care system in the US, but I managed to find a specialist who was very familiar with autoimmune small fiber neuropathy.
• Again I had a skin biospy done as well as autonomic function testing. 
• Then I started high dose prednisone again, which worked well, but I had trouble tapering prednisone down, as symptoms returned whenever I decreased below 20mg. Took me an entire year to get off prednisone, but evenutally I managed and was in remission and prednisone-free in November 2018. 

Episode 3 in February 2019 (most of this still needs to be written)

• Once again, neuropathy came back after a respiratory tract infection in spring 2019. 
• I immediately started prednisone, but given that I had taked it for so long before i didn't want to be on it again, as it can give you very bad long-term side effects. 
• I found a specialized neurologist in Switzerland who started me on IVIG. He was actually recommended to me by the SFN expert I met in Boston in the US.
• I didn't tolerate IVIG well at all. I ended up with menigitis after the first loading dose. Decreasing the dose to weekly infusions at very slow infusion speed made it a bit better, but I still ended up with pretty much continuous terrible headaches for about 2 months. 
• We changed to subcutanous immunoglobulins (SCIG, Hizentra), which kept me in remission for about a year with much less intense headachs. 
• However, whenever we tried to wean off SCIG, symptoms returned immediately. On top of that I still had constant lingering moderate  headaches. 
• We decided to change back to prednisone (30mg/d) to see if that would suppress my immune system and I can wean off it. 
• After a month, I developed symptoms while being on prednisone.
• I started SCIG again, which got me into remission, but only for about 2 months. 
• Then I developed symptoms while on SCIG. 
• I got two infusions of rituximab, which made symptoms a little better but not close to sufficiently.
• We tried oral cyclosporine, which was a total desaster, as it actually caused  neuropathy and erythromelalgia side effects, which made my SFN worse. 
• After cyclosporin didn't work either we were a bit at a loss of treatment options. 
• A friend of mine who is a hematologist brought up trying daratumumab, which we applied for. 
• While waiting for treatment approval, I started pregablin / Lyrica to control pain.
• Before starting daratumumab I had to get my COVID vaccine done.
• Finally, 4 weeks after the second vaccine, daratumumab therapy started.
• For the first month, I didn't really know if daratumumab was helping or not.
• But at week 8, I was doing so much better.
• 3 months into daratumumab treatment, I was in partial remission, but we had to figure out how to continue treatment, as it was very experimental.
• Shortly after that, I developed some neuropathy symptoms again, while still under daratumumab treatment. 
• We decided to start belimumab (Benlysta)  to stabilize the symptoms and then to add daratumumab whenever needed. Our suspicion was, that daratumumab may not be ideal if given continuously.
• I started belimumab and tolerated well. During the first month it was hard to say if it improved my rather mild symptoms, but it definitely kept them stable and I had the feeling they were improving in baby steps. 
• But then in December 2021 I caught a bad respiratory virus, which caused a pretty big neuropathy flare. 
• And that's where I'm at now. I'll make sure to keep you posted....

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