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crisis1152 (@crisis1152)

Question about therapies

Neuropathy | Last Active: Feb 28 1:30pm | Replies (23)

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@crisis1152

Thanks for your info—realize your a patient like me—thought site would be more up to date on info—maybe giving research things and offering “clinical trials” and stuff like that—have actually talked to Stanley Kim myself and he had a “zoom” with Peripheral Neuropathy Success Stories” on 1/13–If drug works it “could” be for most any neuropathy(testing now is diabetic) but cause would have to be “fixed”—which is why “I go nuts” when people use the word “idiopathic”—there’s a “cause” for everyone! Find it! Find a doctor who won’t stop looking! It WON’T stop on it’s own! I’m more than a fighter(it’s getting old)—there has to be “a way out of this” and I’ll find it—you may want to join PNSS—more up to date info there and “zoom” calls with “experts” every 2 weeks

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Replies to "Thanks for your info—realize your a patient like me—thought site would be more up to date..."

There are others besides Winsantor in phase 2+ trials for drugs that stimulate peripheral nerve growth.

* Topiramate is in a phase 2 trial for people. At least one pubmed study showed it increased small fiber nerve density. (https://clinicaltrials.gov/ct2/show/NCT02878798). One of the studies is here (https://pubmed.ncbi.nlm.nih.gov/21437113/)
* A company called Regenancy is in phase 2 trials with something called an HDAC6 inhibitor. They believe it may work for many types of neuropathy. (https://regenacy.com/#our-pipeline)
* Eli Lilly is behind a venture which believes they know the biological mechanism that our bodies use to destroy axons. They're working on inhibitors. https://www.disarmtx.com/approach/

So instead of just pain drugs, there are medications that are in human trials for nerve regrowth and (maybe) more to come.

Winsantor, Regenancy, Disarm all believe neuropathy is caused mitochondria dysfunction in nerves. There are different processes driving it (chemotherapy, HIV, diabetes and even some types of CMT) but they all seem to cause nerve destruction in a similar way.

Winsantor's drug attenuates a constraint that peripheral nerves operate under so they can produce more mitochondria.

Regenancy believes it's a mitochondrial transport issue down the nerve tissue and their compound resolves the "blockage" of this pathway. (Note that a winsantor study also noticed that their drug also improved this transport mechanism https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6029366/)

Disarm discovered how the body is executing axons. If they can attenuate this, they can stop the destruction. Google SARM1.

To me, this is all super exciting. Winsantor thinks they'll release in the US in 2023. Not sure on the others. But it feels like a sea change is coming for many neuropathy sufferers.

Imagine going to your neuro and getting a fix instead of pain medications?