PN: Current research?

Posted by Ray Kemble @ray666, Jun 26, 2023

Hi!

Is anyone following recent research on PN? I've checked, and although I've found lists of clinical trials, most are over or have closed due to a lack of funding. Yesterday's NYT had an interesting article about the high hopes placed on Crispr research. A dozen maladies were mentioned as possible beneficiaries in the coming years (and decades), but not PN. Have any of you read any recent promising research stories?

Ray (@ray666)

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

A slight bit of feflux at night, but not every night

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@bigjohnscho

Do you get any side effects from the R-ALA

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R-ALA is a natural substace found in the body. Taking 600 mg a day in 2 seperate doses has no side effects for most people. For me it seems to do nothing. The original German study says to take it with a fish oil supplement and I have tried that too with little success.

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I have recently read about the study being carried out concerning two existing drugs namely, Atropine and Pirenzepine being studied for the treatment of peripheral neuropathy which seemed very encouraging. Can you give us an update on the current situation on these drugs , incidentally Mayo was mentioned in the study.

John

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@crossette - For about a year now, I have been taking R-ALA 600 mg in AM and 600 in PM. Before that, I took ALA for 3 years. Not sure if it helps or not. Perhaps it slows progression?? How would we know for sure. I can't use fish oil due to blood thinning aspects. I have noticed that just about every doc I see, they all ask if I am taking R-ALA so there must be some belief of benefit in the medical community including Mayo in MN who suggested I take 1200 mg daily for my axonal sensory motor PN.

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@bigjohnscho

I have recently read about the study being carried out concerning two existing drugs namely, Atropine and Pirenzepine being studied for the treatment of peripheral neuropathy which seemed very encouraging. Can you give us an update on the current situation on these drugs , incidentally Mayo was mentioned in the study.

John

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I don't think there has been any recent news on Pirenzepine for diabetic neuropathy. I haven't seen other studies but maybe someone may have more information. Here's the discussion on Pirenzepine status - Is there any update on Winsantor drug?: https://connect.mayoclinic.org/discussion/is-there-any-update-on-winsantor-drug/

Basically the company has been in "preparing" for stage 3 trials since early 2023 - https://winsantor.com/pipeline/

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@crossette

R-ALA is a natural substace found in the body. Taking 600 mg a day in 2 seperate doses has no side effects for most people. For me it seems to do nothing. The original German study says to take it with a fish oil supplement and I have tried that too with little success.

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R-ALA is alpha lipid acid, you need to take 2,000 units with ALC which is creatin . (2000 units.) the combination increases the nitric oxcide in you blood, which increases the blood circulation. I have taken this blood booster for 8 years and the blood pressure in my lower extremities (feet) is almost the normal for someone without diabetes. I have had diabetes since 1978, this combination ha helped me in many ways. My colesterol level is way below normal and since taking this combination my A1C has been between 5.3 and 5.6. I cannot say for sure that's the reason, but I'd like to think these and other suppliments help.

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Hello, I just read the books about FQAD ( Flooroquinolone Adverse Disavility Syndrom Or toxicity). It is about FQ drugs antibiotics that sre prescribe in many forms and it is so toxic that cause peripheral neuropathy not only on legs but all organs including ears and vision. You can find tons of reserch about it online and support groups here and FB. People also getting tendonitis, ligament fractures, bone and muscle problems, mental symptoms, blood sugar problems, aorta rapture, aneurysm, etc. Read up as one doctor wrote that first thing that doctors should ask patients - ask them if they ever took FQ medications. I got rare metabolic disease after it as it triggered genetic predisposition to it I have. It cause GABA neurotransmitter deficiency and mental problem, palps, insomnia, tinnitus usually follows. FDA warned about it but still keep it on the market, at least in genetic forms. Worse thing that symptoms appeat later so most people don`t connect them to this drugs. Officially it is not causing problems very often but in reality it is widespread syndrome. Don`t beat around the bushes, find real reason for disease.

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@crossette

R-ALA is a natural substace found in the body. Taking 600 mg a day in 2 seperate doses has no side effects for most people. For me it seems to do nothing. The original German study says to take it with a fish oil supplement and I have tried that too with little success.

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It appears that everything I read and every supplement advertised contains R- Alpha Lipoic Acid.what do members think about this, does it work or is it a waste of money.

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@bigjohnscho

It appears that everything I read and every supplement advertised contains R- Alpha Lipoic Acid.what do members think about this, does it work or is it a waste of money.

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I think R-ALA can be one of the puzzle pieces for supplements that have been shown to help with nerve health but I don't think R-ALA alone is the answer, but that is just my non-medical opinion. The Foundation for Peripheral Neuropathy has a list of supplements that have been shown to help neuropathy at the end of their list of complementary and alternative treatments - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

Google Scholar can be helpful to find research studies and information on supplements - https://scholar.google.com/

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One thing I have learned in the past 16 years is that everyone's chemistry is different. Some people go into shock if they eat one peanut while most can scarf down half a jar of them with no ill effects. You have to try it yourself to see if it helps you. Buy one bottle and take it daily for a month or so. Then you will know if it is worth buying again.

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