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.

Profile picture for Steve @plenty55

@empresskristine it's hard for me to imagine what to are going through. I have neuropathy that came out of nowhere over two years ago (the symptoms started right after I had Covid that they said was a new strain at that time so this may me the result of long term effect of Covid). It has progressed and become more and more severe. It is affecting my legs and now my arms - pain, burning and weakness. The Lyrica is no longer effective. The neurologist suggests adding Cymbalta but I am hesitating because of the side effects plus it interacts with the blood thinner I am taking for atrial fibrillation. Then only thing that helps me sleep is melatonin. I started with 3 mg but now I am down to 1 mg bf bedtime that I found is enough to give me enough hours to sleep and the pain doesn't wake me up. I feel sympathy for your pain and hope you find relief. I live in small town IL.

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@plenty55 have you been checked for Long Covid?

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Besides neuropathy, after I got Covid my body doesn't regulate the temperature - sometimes I feel cold when it's hot and my body feels like its burning up when it's normal temp outside. I also don't sweat.

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Profile picture for revdorth @revdorth

Some one posted a vido about 3-4 weeks ago that answered the question you raised. I am so skeptical of everything these days being Ai generated, that I almost didn't watch it but found it did make sense. He is a researcher- who is working on neuropathy and is lacking funding since his belief is, neuropathy is considered incurable so there is no profit angle. He also wondered why the many of us who suffer from neuropathy are not demanding that funding goes to neuropathy research. He indicated that we suffer in silence so few know how severe a problem neuropathy is ,and how many of us there are. As I said, knowing how profit is a huge motive for funding anything - think weight loss drugs = I found him to be very believable . Maybe the person who posted that video can post it again.

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@revdorth
I live in Texas and went to see Dr Anne Oaklander in Boston. She has lectures and medical research papers. Diabetic neuropathy is what the doctors go off of with the most research. There are a lot of research neurologist. One size does not fit all with different causes. Her mother was a research neurologist, she is a research neurologist along with her daughter.
The problem the majority fall under diabetic neuropathy, then you have idiopathic, medication induced and least autoimmune which is mine. Try to find documentation on autoimmune neuropathy very little. The foundation of peripheral neuropathy just granted researchers grants. Did he apply?
https://m.youtube.com/watch
https://m.youtube.com/watch
https://www.foundationforpn.org/

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Profile picture for artemis1886 @artemis1886

@revdorth
I live in Texas and went to see Dr Anne Oaklander in Boston. She has lectures and medical research papers. Diabetic neuropathy is what the doctors go off of with the most research. There are a lot of research neurologist. One size does not fit all with different causes. Her mother was a research neurologist, she is a research neurologist along with her daughter.
The problem the majority fall under diabetic neuropathy, then you have idiopathic, medication induced and least autoimmune which is mine. Try to find documentation on autoimmune neuropathy very little. The foundation of peripheral neuropathy just granted researchers grants. Did he apply?
https://m.youtube.com/watch
https://m.youtube.com/watch
https://www.foundationforpn.org/

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@artemis1886 I have listened to her lecture (the one on YouTube you recommend) many times and she is definitely renowned for her work in SFPN. However, this lecture is 8 years old, and I’m surprised that there aren’t any more current lectures available. We are all waiting and depending on her, but we’ve been waiting for some advancement for a long time. It’s a shame the funding, $$$$, isn’t there to delve into more research.

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Profile picture for jchet @jchet

@artemis1886 I have listened to her lecture (the one on YouTube you recommend) many times and she is definitely renowned for her work in SFPN. However, this lecture is 8 years old, and I’m surprised that there aren’t any more current lectures available. We are all waiting and depending on her, but we’ve been waiting for some advancement for a long time. It’s a shame the funding, $$$$, isn’t there to delve into more research.

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@jchet I have lost my link to a recent article, but the gist of it was that one of the biggest limitations in clinical research right now is the lacking of willing participants in clinical trials.
For many medical issues, the funding is there, the research is ongoing, but trials struggle to enroll enough participants. One study on bronchiectasis, an uncommon lung disease was only able to recruit fewer than 50% of their patient goal.

Here is how to find neuropathy clinical studies you may be able to participate in to advance the science:
https://neuropathyresource.com/neuropathy-clinical-trials/

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Profile picture for jchet @jchet

@artemis1886 I have listened to her lecture (the one on YouTube you recommend) many times and she is definitely renowned for her work in SFPN. However, this lecture is 8 years old, and I’m surprised that there aren’t any more current lectures available. We are all waiting and depending on her, but we’ve been waiting for some advancement for a long time. It’s a shame the funding, $$$$, isn’t there to delve into more research.

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@jchet Did your friend apply for a grant from the foundation of peripheral neuropathy? They released their grants earlier this year. There is money for research if you know where to look. Seeing her in person is even better! She helped me a lot! I still occasionally fly to Boston when having problems! I am getting ready to go back! Having disabling problems with my whole left leg. It’s not coming from my back. I am starting to wonder if it’s a side effect of the Benlysta for my lupus.

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Profile picture for Sue, Volunteer Mentor @sueinmn

@jchet I have lost my link to a recent article, but the gist of it was that one of the biggest limitations in clinical research right now is the lacking of willing participants in clinical trials.
For many medical issues, the funding is there, the research is ongoing, but trials struggle to enroll enough participants. One study on bronchiectasis, an uncommon lung disease was only able to recruit fewer than 50% of their patient goal.

Here is how to find neuropathy clinical studies you may be able to participate in to advance the science:
https://neuropathyresource.com/neuropathy-clinical-trials/

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@sueinmn yes that is why winsantor has had such delays for their very promising treatment which may become available through Montana's Expanded Right to Try. https://share.google/aimode/RK3oWfNSv5s0xFXQn

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You are not asking too much. I was there with all they can do was give me Lyrica or gabapentin. I was on a very low dose of Lyrica and was so fatigued I couldn't walk to my car. Then my husband died and had to deal with that but later on I read on this website that alpha lipoic acid 600 mg made by Source Naturals helped plus a good B complex vitamin (B12 helps even if your B12 is normal as your body pees out what it doesn't need). Anyway, long story short within a short time can't remember how long but not long am 90% better - take the two of them every morning. It was a Godsend. Found out later the dr I was seeing didn't know about this product and has left the clinic but the other one did. He took special ed or training for this and knew it helped. See, the bottom line doctors don't study supplements. I went to a nature store and the owner takes it too and had only one bottle left - LOL - he said "can I hold it for you." LOL, boy he made my day as I had pins and needles throughout my body, numbness, burning and it all. TRY it what do you have to lose and don't take that awful medicine. Good luck and God bless. It's hell having neuropathy.

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Please read my post at the bottom about alpha lipoic acid 600 mg etc - it saved me - supplement at nature store. It helped 90%

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Profile picture for gnocchi @gnocchi

You are not asking too much. I was there with all they can do was give me Lyrica or gabapentin. I was on a very low dose of Lyrica and was so fatigued I couldn't walk to my car. Then my husband died and had to deal with that but later on I read on this website that alpha lipoic acid 600 mg made by Source Naturals helped plus a good B complex vitamin (B12 helps even if your B12 is normal as your body pees out what it doesn't need). Anyway, long story short within a short time can't remember how long but not long am 90% better - take the two of them every morning. It was a Godsend. Found out later the dr I was seeing didn't know about this product and has left the clinic but the other one did. He took special ed or training for this and knew it helped. See, the bottom line doctors don't study supplements. I went to a nature store and the owner takes it too and had only one bottle left - LOL - he said "can I hold it for you." LOL, boy he made my day as I had pins and needles throughout my body, numbness, burning and it all. TRY it what do you have to lose and don't take that awful medicine. Good luck and God bless. It's hell having neuropathy.

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@gnocchi alpha lipoic acid has been used by IV by Germany since the early 1951. . They have discovered that the pill doesn’t work as good as the IV. Germany requires a prescription since its IV.
Why the US hasn’t researched it is beyond me since it has been around so long. As an RN to me it’s frustrating knowing something is out there since the early 1950’s.
https://pubmed.ncbi.nlm.nih.gov/10595592/
https://lpi.oregonstate.edu/mic/dietary-factors/lipoic-acid
https://pmc.ncbi.nlm.nih.gov/articles/PMC4124142/

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