Peripheral Neuropathy - Result of PMR or Prednisone?

Hello @kspowell, You will noticed we added to your discussion title to let members know what your question is and hopefully share their experience with you. I've had small fiber peripheral neuropathy for over 25 years but only bothered to get a dagnosis in 2016. My first occurrence of PMR was in 2007 which was after I was having neuropathy symptoms in my feet. I haven't seen any research mentioning any connections but there might be some out there.

I think the best outcome can occur when we learn as much as we can about each condition that affects us and what our best treatment options are. I also have osteopenia, degenerative arthritis, carpal tunnel in my hands and a few other obnoxious conditions that occur in us older folks.

Have you seen a podiatrist or doctor about your new symptoms of little feeling in the feet and toes along with unable to move several toes?

Thank you . Yes I am seeing my primary this week to start the process. So many of the strange things that happen to me now seem to be associated with PMR or Prednisone I thought I'd rule that out first. How did you get diagnosed?

My primary referred me to a neurologist who ordered some labs and a nerve conduction test prior to the physical exam with the neurologist. I was diagnosed with idiopathic small fiber peripheral neuropathy which he thought could possibly be hereditary since both my sisters and mother had similar symptoms. I also have a cousin on my mom's side who has neuropathy.

When my PMR was active, I experienced peripheral neuropathy in my hands, due, I believe to swelling in the carpal tunnel area of my wrists. There was numbness and tingling which was very bothersome and upsetting. After I began prednisone treatment, these troublesome symptoms lessened and eventually disappeared. At present, I am grateful to be in remission and not in need of prednisone.

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.

Yes. My right hand almost atrophied. My left hand started, but since Prednisone (2 weeks), the left hand is pretty much back to normal, but the right middle finger is still stiff. I cannot straighten it out. I keep working it with a rubber ball. Hoping it will go completely back to normal as I'm right hand dominant and need it for work. At least I now have 85% use. Happy you're in remission. Cheers!

Thanks for your kind reply. Glad you are improving with prednisone.

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.

Hello @valerie6062, Welcome to Connect. I haven't read any conclusive evidence on prednisone causing neuropathy but I definitely agree with you that eyesight is of key importance when it comes to treating giant cell arteritis. Here is some information that might be helpful on the treatment strategies:

--- Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica: https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429.

I haven't had GCA but my rheumatologist and doctor were always asking me to let them know if I had any symptoms of GCA like scalp or temple tenderness/pain or vision problems. In my first round with PMR, I had some pain flares due to tapering off of prednisone too quickly or too big of a drop too fast.

Do you think the flare ups causing the roller coaster ride with the treatment is due to tapering too fast?

I want to warn people taking prednisone. I was diagnosed with GCA 3 1/2 years ago and started my dose with 60 mg and while tapering down got PMR and CPR numbers were slow to come down. I have developed several side effects from taking Prednisone. One of which is a shoulder replacement and in May I am going to have a hip replacement from developing Avascular Necrosis.