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

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@valerie6062

I have peripheral neuropathy in feet which only started with my diagnosis of large cell arteritis resulting in my taking 60mg of prednisone initially and being weaned very slowly down to 5 mg. Unfortunately I had another double vision episode and I had to go back to 50mg. I'm on my way down again [ 37.5] and tomorrow down to 25mg. It has been such a "roller coaster" time for me .
My Drs are not keen to blame prednisone for the neuropathy but the coincidence for me is too strong to deny. It has changed my life going from a reasonably fit , still quite agile 79 year old woman to a wobbly , slow moving old lady. Not impressed at all . I acknowledge that my eyesight is of key importance so I know that I have to comply.

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I have peripheral neuropathy too. It was confirmed by an EMG and a nerve conduction study (NCS). A neurologist called my peripheral neuropathy "idiopathic" meaning the cause of it was unknown. It started as a vague numbness in my feet which gradually worked its way up to well above my knees. The neuropathy was also called "diffuse" because my arms were also affected. My hands never feel numb but they sometimes feel like they are freezing even in the summer. My hands are warm --- they only feel like they are freezing.

A vitamin B-12 supplement was "recommended" by the neurologist but not prescribed. When I first felt the vague sense of numbness in my feet, I told my GP that it was the least of my problems.

After PMR and other autoimmune problems were effectively treated with a biologic rather than prednisone, I was saying peripheral neuropathy was higher than PMR on on my list of problems. Pain from PMR held first place on my problem list for more than 12 years.

In my opinion, there are several possibilities about what caused my peripheral neuropathy. I'm taking into account that it seems to be improving since I tapered off prednisone.

1) Prednisone is known to cause a loss of potassium and vitamins B-6, B-12 and folic acid. Prednisone also interferes with vitamin D, which affects calcium metabolism. Because of taking prednisone, I was also taking Zantac to "protect" my stomach. Zantac and other acid-suppressing drugs can make it difficult to absorb vitamin B-12.

2) I might have what is called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).
https://medlineplus.gov/ency/article/000777.htm#:~:text=Polyneuropathy%20means%20several%20nerves%20are,to%20be%20an%20autoimmune%20disease.
I once asked my rheumatologist if my immune system could be attacking my nerves. My rheumatologist said he "wouldn't be surprised" based on my having a "full range" of rheumatology problems.

3) PMR might have played a role because of interfering with the blood supply to my nerves. PMR is thought to be a type of vasculitis.

I have been off prednisone for 3 years. I take a multivitamin twice per day to cover any and all vitamin deficiencies. Subjectively, I would say my peripheral neuropathy is improving. I would need another NCS to know for sure.

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@jcaffrey47

I also suffered from peripheral neuropathy which started gradually after I was diagnosed with PMR and was taking Prednisone, starting at 20 mg a day. The symptoms were pretty much limited to tingling in my feet and increased both in severity and duration after about 3 months on prednisone. I would not say they were ever painful but they did disrupt my sleep. So, I started a research effort to find remedies or solutions on the internet.
Without cataloging all of the various ideas let me cut to the chase by saying that B12 is the key to dealing with this problem. One way to get more B12 is to take oral supplements which are widely available without a prescription but the body does not absorb B12 very well and you could probably take massive doses of the pill which is dissolved under the tongue but not notice any difference in symptoms. The key is to administer the B12 by injection which does require a prescription. There are two ways of doing this. The first is to have injections in the hip or shoulder but this requires another person to do the injection which is not a big deal but many spouses might be squeamish. The second way is to inject it yourself in an area near the belly button. This method requires a much shorter needle. Since I have been injecting myself with methotrexate weekly adding this injection was simple for me.
I have been taking bi-weekly injections of 1000 and my symptoms have totally disappeared in a short period of three months. I expect to continue these injections until I am off prednisone.
I feel compelled to add a side note which has nothing to do with peripheral neuropathy and that is that most of the problems or side effects of methotrexate disappear if you inject the MTX rather than take it in pill form.

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Hi jcaffrey. This sounds like valuable information and suggestion. I’m suffering right now from burning feet and tingling pins and needles. Its Driving me crazy. I had a couple of questions: 1) was your b12 low before injecting yourself? 2) and how many mgs of b12 did you inject? 3) how long were you injecting yourself the b12 (duration) 4) how many times a month were you injecting yourself?

Thank you

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One direct cause of peripheral neuropathy which is seldom mentioned is an excess of vitamin B6, which is often included in large amounts in magnesium supplements, multivitamin tablets and other supplements. I asked my doctor about B6 supplements after seeing them recommended somewhere and she sent me for blood tests first. Blood tests showed I had an extremely high level of B6, over 3 times the level likely to cause Peripheral Neuropathy, caused by the 60mg of B6 included in my daily magnesium tablets. Daily intake of B6 is supposed to be around 1-3mg only, which is easily consumed from food. The test lab included a warning about the likelihood of me developing peripheral neuropathy and warned me to find the source and eliminate it.

Before taking any of the B vitamins as supplements, get blood tests done to find out your current levels. More is not better in some cases and overdose can be dangerous.

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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 also experienced some minor Peripheral Neuropathy at about the same 6-month time frame at 6mg Prednisone. I felt numbness in my feet and the ends of my fingers. My neurologist suggested that I take Alpha Lipoic Acid and my rheumatologist recommended to take Vitamin B -- so the previous comment about high levels of B6 surprised me. I have been off Prednisone for 8 months and it is getting better.

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@thetony

Hi jcaffrey. This sounds like valuable information and suggestion. I’m suffering right now from burning feet and tingling pins and needles. Its Driving me crazy. I had a couple of questions: 1) was your b12 low before injecting yourself? 2) and how many mgs of b12 did you inject? 3) how long were you injecting yourself the b12 (duration) 4) how many times a month were you injecting yourself?

Thank you

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To answer your questions. 1) I first discovered that my B12 was low after starting the Prednisone. 2) I injected 1 ml. 3) for a full 2 years. 4) every 10 days. I also took B12 tablets orally in the am and pm but the absorption rate is so poor that the injections were the way to go. The tingling in my feet ended almost immediately after starting the injections.

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@douglwuoregonedu

I also experienced some minor Peripheral Neuropathy at about the same 6-month time frame at 6mg Prednisone. I felt numbness in my feet and the ends of my fingers. My neurologist suggested that I take Alpha Lipoic Acid and my rheumatologist recommended to take Vitamin B -- so the previous comment about high levels of B6 surprised me. I have been off Prednisone for 8 months and it is getting better.

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Different forms of vitamin B do different things. B6 is the one connected to peripheral neuropathy, not the others. If you search "vitamin B6 toxicity" you'll find warnings about PN. In Australia, our government has made it mandatory to include warnings about PN on any supplement that contains vitamin B6 in doses larger than 10mg.

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I thought mine was because of the Type 2 diabetes, induced by prednisone. As I wean, I'm hoping it will go away. But perhaps it's an age thing too?

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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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