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This is the $64,000 question. . .WHY NO MED FOR NEUROPATHY?

Posted by highdesertdweller @highdesertdweller, Sep 6 1:07pm

YES, Capitalized as others have asked this, trumpeted this question before. With: all the money out there, the blockbuster drug potential, Big Pharma money, et al. how can a drug not have been produced that blocks the pain, electrical charge and current, pins/needles effect of neuropathic pain and discomfort?? Something that targets this type of pain and nerve pathway. It's just INCONCEIVABLE. . . . No aspirin, no Advil, no prescription med except off- label Lyrica, Gabapentin, anti-depressants, etc.

SO, DOES ANYONE KNOW OF ANY MEDICATION IN THE OFFING, NEAR FUTURE??? Is anyone or anyplace working on this??? If for the massive amount of money to be made if nothing else? Do I ask too much?!

Interested in more discussions like this? Go to the Neuropathy Support Group.

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bb0753 | @bb0753 | Sep 30 1:43pm
In reply to @megidigo "@insanepain Looking back the most honest thing a medical practitioner has told me about this condition..." + (show)
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@insanepain
Looking back the most honest thing a medical practitioner has told me about this condition when I asked “what can I do” was the following “Find an join a research trial.” Sadly that was also when I knew I was truly ****ed. Well and the fact he left the room for a good few minutes before coming back to and point blank said “there is nothing we can do.” My response was the question above. I had never heard of this and was expecting to receive a prescription of some kind and get back to things. I do wish I was given better info about what I have though as I would have done things a bit different when this first started and I might have fared a bit better.

The problem for me is it seems all the trials are focused on pain and I dont really have that. My body is breaking down, weird uncomfortable feelings and more (unfortunately)!

Ironically the trial that I would have been most interested in was completed a couple of years before I was diagnosed and it was in the city I was living in. I do wander “seriously? Like what the hell?”

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@megidigo what trial would you have applied for? Do you know the cause of your PN? Where do you live if you don't mind sharing? Do you know the results of the trial you referred to?

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megidigo | @megidigo | Sep 30 2:07pm
In reply to @bb0753 "@megidigo what trial would you have applied for? Do you know the cause of your PN?..." + (show)
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@megidigo what trial would you have applied for? Do you know the cause of your PN? Where do you live if you don't mind sharing? Do you know the results of the trial you referred to?

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@bb0753
It was for one of Winsantors trials. I dont want to dox myself so dont want to give out more info at this time lol. Here is a link below. I think there was another one at a later date in Toronto too that I had found.

And I guess for Winsantor naysayers that is the official government of Canada webpage.
https://clinical-trials-search.canada.ca/en/clinical-trial/226063-diabetic-neuropathic-pain
If it ever comes out I think I may be beyond its help now though as I have autonomic symptoms and its noted that gastroperisis would have you excluded from the trial. 😔😢. Sucks but thats how things go for the ol Megidigo….I wander why 😞

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bb0753 | @bb0753 | Sep 30 2:59pm

I am familiar with Winsantor and very hopeful to get this through Expanded Right to Try in coming months. I don't have diabetic neuropathy. I don't think the auto issues would prevent you from getting it in Montana.

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megidigo | @megidigo | Sep 30 5:47pm
In reply to @bb0753 "I am familiar with Winsantor and very hopeful to get this through Expanded Right to Try..." + (show)
Profile picture for bb0753 @bb0753

I am familiar with Winsantor and very hopeful to get this through Expanded Right to Try in coming months. I don't have diabetic neuropathy. I don't think the auto issues would prevent you from getting it in Montana.

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@bb0753

Maybe not but my mobility does prevent me. Its going down fast. Im also in Canada. I do know that they are pursuing conditional approval in the Canadian market but not details on it. Win stands for Winnipeg and Tor for Toronto - two cities in Canada. One of the researchers from WinSanTor is at the University of Winnipeg and I believe some of the research started or at least was done there. It needs approval from Health Canada though so pretty sure its the same or similar to FDA approval unfortunately.

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