Peripheral Neuropathy - Result of PMR or Prednisone?

Posted by kspowell @kspowell, Jan 17, 2022

I am 8 months diagnosed with PMR currently down to 6 mg daily Prednisone. I have recently developed Peripheral Neuropathy and am unable to move several toes, and the ball of my foot and toes have little feeling. Has anyone else experienced this as a result of PMR or Prednisone? If so what should I expect as an outcome? Thanks much

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@napapos

Kspowell,
I have had the same PN in the balls and toes of both feet for ten years. I am asthmatic and have taken various doses of prednisone for over 40 years. I find that prednisone has no effect on my PN.
I had no prednisone for about three years until 3-20-23 when I was diagnosed with PMR. My issues started in January 2023 when my whole body went into a painful shock. WTHeck! I am 73 and have never had pain like this! I am now on my second taper. 10 mg for two weeks, 7.5 mg for two weeks, then 5mg for two weeks. Then neurologist tests for inflammation. I hesitate to alter my dosage without my doctor’s permission, so I take Advil to supplement pain relief. 5mg prednisone is not working. Will see my doctor next week for reevaluation. Let me know if you find anything that works for your PN. I take Lyrica daily and that only mildly reduces my PN pain.
Blessings..

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Welcome @napapos, I'm glad to see that you have connected with @kspowell. I'm sorry to hear that PMR joined neuropathy and your other conditions. PMR is definitely a what in the heck is going on condition. I just think of it as Mr. Ugly raising his head to give me additional pain and grief. Sometimes you can have PMR flares with normal inflammation markers (SED and CRP). We have many other discussions you might be interested in that you can find in the Polymyalgia Rheumatica (PMR) Support Group here: https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

I'm not sure how much your starting dose was back in March but the name of the tapering game is slow, slower and slowest. You might find this discussion helpful:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

Can you let us know what you find out at your appointment next week?

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Has anyone in remission noticed a lingering muscle weakness from PMR? After 18 months of taking Prednisone, I was happily able to taper off four months ago without experiencing pain, but still some stiffness in the mornings. However, I seem to have lost all strength in my arms, hands and pelvic girdle, which is where my pain used to be. Most of the time I am unable to rise from a sitting position without assistance. I have even installed a lift assist recliner, something I did not visualize having to do for at least another ten years! I've also experienced pins and needles in my hands which I have put down to inflammation in the carpel nerves. Not complaining because I'm so glad to be out of pain and off Prednisone, but just wondering if others have experienced the same.

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I developed Peripheral Neuropathy at a similar Prednisone dosage and time as you. I noticed numbness in my fingers and a burning irritation in my feet at night.

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@pkalkstein

My PN was not as bad as yours, but it prevented me from sleep unless I froze my foot with ice packs. But two weeks after I began taking low-dose naltrexone, the neuropathy was gone, and it has not returned. Others on this forum have found that LDN works for them, too. It doesn't help everyone, but it sure changed my nights,

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I requested naltrexone from the pain/neuro doc. He said he tried it for some of his patients and found lackluster results. I hope to eventually find a doctor who will listen.

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Ouch. Well, LDN is distinguished in that people react differently to it. I'm sure that "some" of his patients found it ineffective for something. But, considering that LDN does no damage, is cheap, and has helped many people combat many conditions, it is pretty foolish not to try it. Please keep trying.

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@annettetompkins

Has anyone in remission noticed a lingering muscle weakness from PMR? After 18 months of taking Prednisone, I was happily able to taper off four months ago without experiencing pain, but still some stiffness in the mornings. However, I seem to have lost all strength in my arms, hands and pelvic girdle, which is where my pain used to be. Most of the time I am unable to rise from a sitting position without assistance. I have even installed a lift assist recliner, something I did not visualize having to do for at least another ten years! I've also experienced pins and needles in my hands which I have put down to inflammation in the carpel nerves. Not complaining because I'm so glad to be out of pain and off Prednisone, but just wondering if others have experienced the same.

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I am going for a EMG to confirm Prednisone induced myopathy, biggest concern is getting up from sitting position and using stairs, ramps. I also cannot lift my legs when laying supine, and have muscle weakness in arms also. Fatigue arrives everyday around noon and all is done for the day once that arrives.
I am one month prednisone free after 4 long years including a 6 mth period of accidental overdose of 35mg daily.
I tried to begin a rehabilitation program to battle the lose of conditioning, muscle and pain post prednisone and it was the physiotherapist that bought up the myopathy.
I also have peripheral neuropathy however mine was a result of Leflunomide, i was stopped once the neuropathy was identified.
PMR has been a nightmare seems it is considered benign by a lot of the medical world as it is supposedly self limiting but as far as i am concerned it packs a mighty punch.

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Your comment about Leflunomide and peripheral neuropathy fascinate me. Within one month of taking Leflunomide, I experienced a skin burning/irritation/pins and needles sensation at night. Has anyone else had this experience after taking Leflunomide?

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My rheumatologist commented today that peripheral neuropathy is often seen in conditions of high inflammation auto-immune conditions. I've had it since my GCA/PMR started in January 2023. My symptoms are tingling and numbness in my hands and feet. I think the peripheral neuropathy started before I was put on Prednisone. The peripheral neuropathy has been fading as my condition has improved, and is now (on Sept 1, 2023) almost gone.

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I have added 600 mg of alpha lipoic acid to my daily supplements. It has done wonders in improving my peripheral neuropathy. Hope it helps all of you too!

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