Diagnosed June 2023, Started Lupron July, Zytiga and prednisone August, IMRT 28x 70gy, including distant oligometastatic retroperitoneal lymph nodes November. Everything going fine only minor side effects and I feel good. Then, May 1st 2024 I have sudden onset of peripheral neuropathy. Wow, what a buzzkill. Worse than stage 4 cancer except you don’t die. Anyone out there have similar experience or ideas about cause: ADT, prednisone, radiotherapy? Any ideas appreciated.
Thanks
PJ
Hi pj1121,I'm s0o sorry you have to go through any of this.
My neuropathy is from auto immune. I was taking hydroxyqloroquine for the auto but it wasn't helping all of the neuropathy. The guys on here suggested R-lipoic acid and some other supplements. I started on all of the supplements but narrowed it to this supplement and it helps alot. Every person is different. I sure hope you find relief.
🌻Jackie
R-alpha lipoic acid? R-ALA is the one you say works?
Can you say which brand of RLA you use, and what dose, and the timing of your usage?
isn't gabapentin prescribed for neuropathy? it is one of the most commonly off label prescribed drugs made. i think originally it was an anti seizure drug but is now prescribed for everything. i had idiopathic neuropathy no idea what caused it but gabapentin fixed it.
i would much prefer to find the cause and eliminate that but for me a couple of months of gabapentin worked.
I have peripheral neuropathy in the balls of my feet from Cisplatin chemotherapy 10 years ago. I was unaware of using cold socks etc to avoid this. At least it does not affect my balance. All I can say is you can get used to it, it’s mostly mind over matter.
"ADT, prednisone, radiotherapy" What does our doc think is causing it?
B vitamins are supposed to help.
But apparently they help the cancer cells to grow faster as well.
After surgery, radiation, Provenge, Lupron I developed peripheral neuropathy in my feet 10 years ago and still have it. At the moment, I’m taking gabapentin and duloxetine. I’d suggest that you go see a neurologist, ideally one who specializes in neuropathy. A doctor who specializes in pain management might also be able to help you. I also took an online course in mindfulness based stress reduction. As someone else said above, you are going to have to be able to live with this. I wish you luck.
I have neuropathy in my feet. I am fairly certain it is a result of stenosis in L4&5 vertebra. I do not think it is caused by the PC or the treatments (RT & Eligard). I've tried chiropractic to no avail. I take no drugs for it besides occasionale ibuprofen, however a PT friend showed me some hamstring stretches before bed and that sometimes helps significantly. If I sit too long without getting up it gets worse. It is a mystery ailment, not consistently responsive to anything and very annoying. Exercise seems to help, but, again, it is a very capricious syndrome.
What is the cause of peripheral neuropathy?
FROM A I
ChatGPT said:
Peripheral neuropathy is a condition that occurs when the peripheral nerves, which are the nerves outside the brain and spinal cord, become damaged. There are many potential causes of peripheral neuropathy, including:
Diabetes: High blood sugar levels over time can damage nerves, leading to diabetic neuropathy.
Nutritional Deficiencies: Lack of essential nutrients, such as vitamin B12, can cause nerve damage.
Infections: Certain infections like Lyme disease, shingles, and HIV/AIDS can affect the nerves.
Autoimmune Diseases: Conditions like rheumatoid arthritis or lupus can lead to nerve damage as the immune system attacks the body's own tissues.
Trauma or Injury: Physical injury to the nerves, such as from accidents or repetitive stress, can cause neuropathy.
Exposure to Toxins: Heavy metals, certain medications, and chemicals can damage nerves.
Genetic Disorders: Inherited conditions like Charcot-Marie-Tooth disease can lead to peripheral neuropathy.
Kidney or Liver Disease: Both conditions can result in nerve damage due to the accumulation of toxins in the body.
Alcoholism: Chronic alcohol use can lead to nutritional deficiencies and nerve damage.
Chemotherapy: Certain cancer treatments can have neuropathic side effects.
Identifying the underlying cause of peripheral neuropathy is crucial for effective treatment and management. If you or someone you know is experiencing symptoms, such as numbness, tingling, or pain in the extremities, it's important to consult a healthcare provider for a thorough evaluation and appropriate care.
Good Luck, Good Health and Good Humor.
j-o-h-n
I was hit with peripheral neuropathy in early January manifesting in throbbing aching foot pain sometimes up to the knee. Very debilitating in that I was for the most part restricted to my home for almost 5 months. A bit depressing too. . . Long story but then started on gabapentin - which did a lot to block most of it (keeping the dosage as low as I can). . . I’ve done research and have started on nerve re-building supplements. I plan to follow a regimen of that for 3 to 4 months then lower the gabapentin and see what happens. Meanwhile I also do foot and leg exercises for strengthening and circulation. . . Some say long term statin use and proton pump inhibitors (nexium etc) can contribute to PN.
I’m taking R-Alpha lipoic acid. What other supplements are you taking?
Can you tell use what brand of RLA you use and what dosage and the timing of taking?
Also, do you take with food or not? Thanks.
Life extension 480 morning and night after eating. I have no idea if it does anything.
My sensitive stomach requires that I take pills, meds after eating. Good practice in general. ‘They’ say 600 mg of R-ala per day is key to repair. I’ll spread pills over several meals ( not all at once). Acetyl L-carnitine is said to be of benefit. Google
I have neuropathy in the feet and I've initially managed it with high-doses of R-Lipoic acid, Benfothiamine and NAC. Once the pain subsided after a few weeks, I've eliminated NAC and reduced the doses of R-Lipoic acid and Benfothiamine. I am not a doctor so please check with yours to make certain it is now counter-indicated for you before trying something of the kind. Hope this help.
I have had some success against a long-duration burning-pain neuropathy of the calves which only kicks in at night when I lie down. My case is small-potatoes compared to the neuropathy most here are suffering.
After years of trials I found two things which knock down the pain for almost all the night. the two-- DMSO and a CBD- 1:1 Avexia Balm.
Both work about the same and have bumped my REM & Deep sleeps [fitbit] up from 20mins to 1hr:20 mins. The DMSO gel is very cheap so, if you have a mind to, try it first.
I apply my two in a daily rotation about 2 hours before bedtime. I found that applying to the back of the knee rather than the calf itself did the trick. I had tried DMSO directly on the calves previously w/o success.
Also, I got some relief from vitamin B-6 (a lady pharmacist clued me into this) I did 100mg for two weeks and now do 100 twice a week with a B-multi mid week. Don't overdo the B-6 as it supposedly can CAUSE neuropathy if you take too much.
I found that these protocols do mainly two things: they reduce the intensity of the pain and they push back the onset of the pain. Both allow falling asleep before they wear off, and the return pain is much reduced, sometimes it is just a buzz.
I had tried alot of things to get to this point including nerve conduction tests, and arterial blood flow tests but mainline medicine more or less failed. Of course, I was prescribed the Gabapentin and did a course of it w/o any benefit. NB: the ladies on the RLS, restless leg board here on HU had many warnings and bad experiences with GP.
Some of the stuff that didn't work-- ionic magnesium, CoQ10, quinine!, mucuna, tyrosine (dopamine theory), calf stretching, red-light therapy, DMSO on calves, and PEA. Red-light therapy didn't change the pain level, but it did push back the time to onset.
Good luck and I hope you get some relief.
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