When my neuropathy came back...

My second neuropathy flare after almost 4 years in remission Hi everyone, good to see you back here! 🌺 In this post I'll write some more of my story with autoimmune small fiber neuropathy. I wrote in one of my last posts, that prednisone had gotten my small fiber neuropathy into remission back in 2014. For months after this, I was worried that my symptoms...

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Daratumumab - 3 week update

3 weeks into daratumumab therapy Hi everyone, good to see you back here! 🌺 It's been 3 weeks since I've started daratumumab (Darzalex) as an off-label treatment trial for my autoimmune small fiber neuropathy, so I thought I'd give you an update. In short, I can tell you that I still don't know a whole lot more. Some symptoms have definitely changed but...

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SARM1 inhibitors: a cure on its way?

SARM1 inhibitors - a future cure for small-fiber neuropathy? Hi everyone, good to see you back here! 🌺 Today's post is for my fellow pharma-nerds, treatment optimists, and for everyone who is interested in drug development. I'll write about a drug class called SARM1 inhibitors, which are in early drug development, and which could potentially treat autoimmune...

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Daratumumab therapy started

My daratumumab therapy started Hi everyone, good to see you back here! 🌺 Last Tuesday, my daratumumab therapy started, so I thought I'd give you a quick update. Actually, there is not much to report yet anyway, but I'll just tell you how the first infusion went.... I spent all day at the hospital on Tuesday On Tuesday early morning, Steve drove me to the...

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