PMR - Decreased prednisone and pain returned

I agree. 72 and still working part-time. Was full time until the PMR kicked in full blast last October. Fortunately, I don't work in the afternoons, so power nap fits in well. I dropped down to 12.5mg yesterday and feeling the impact of it today (my day off). Fell to sleep at 10:30 this morning and woke up after 12:30. The get up and go got up and went. I did manage to get my laundry out on the line prior to the "nap". I could have another nap now and it's 3:15. I'm not looking for empathy in a Rheumatologist really, although I think it should be within her scope to exercise a little. My problem was that everytime I tried to talk, she talked over me with an already-formulated answer to a question I was not asking. Maybe I should have a cup of coffee for an energy boost, which is what she suggested and I don't think it was tongue-in-cheek. Maybe her ''sense of humour" escapes me. 😉 Just seeing how this tapering goes, one day at a time. Ditto on the truly grateful PMR is not life threatening and that at 72 I'm still able to work and keep up with the young'uns. Cheers!

Find someone new. yes I have jaw pain. It was sever enough that I went to a cardiologist to make sure. It comes and goes just like the pain in the arms and legs and low back, and neck. I have been at 4 mgs for a while, but had to do a prednisone taper with the covid vaccines, just so I could walk and not look like a duck.

Has anyone else found themselves taking as much as 40 mg of prednisone and still having severe hip / lower back pain with exertion? My PCP wants to wait it out w/out raising dosage. I’m unhappy at the limitation on lifestyle that the painful walking brings.

Are you taking 40 mgs. now and still in pain? I've never taken over 15 though some do take 20 mgs. I, too, suffered with severe hip/lower back pain. My rheumatologist figured out there must be something else going on and ordered x-rays. Turns out I'm bone on bone and need hip replacements. In addition I have hip bursitis and it can be difficult to determine if it's PMR or bursitis. I do hope you can get this resolved. Pain is a pain.

From what I've read, a lower dosage of prednisone (like 20 mg) has a "miraculous" effect on PMR. I was on a 40 mg dose of Prednisone for Giant Cell Arteritis - and that causes pain in the head and neck. The medical textbook I have states that if there isn't a dramatic response to the prescribed dose of prednisone for PMR (about 20 mg) the physician should search for an alternate diagnosis. Wishing you the best.

I was on Prednisone 10 mg for over a year and neuropathy in my legs went almost away about 90% of the time, but I started getting side effects from it, gained 30 pounds, high blood sugar, high cholesterol so the Certified Registered Nurse Practitioner, decided we will take you off it. So he lowered me to 5 mg for a month then now I am at 4mg a month and now my Neuropathy in my legs returned to what it was before I started taking 10 mg of Prednisone. It is dang if you do dang if you don't. Keep the 10 mg and have almost no neuropathy pain and have all the prednisone side effects, or no prednisone side effects and have neuropathy pain 24/7. Oh just realized this is an old thread.

Hi @hughpuppies, Reading through your earlier posts you mentioned that the pain in your legs might be related to blood flow. I've had issues with swelling in my legs but never had any associated pain. A cardiologist diagnosed me with lymphedema for which I wear compression socks during the day to control the swelling.

Can you share more about your diagnosis? Have you been seen by a cardiologist?

I am experiencing the exact same thing. I just dropped down to 3 mg from 4 and everything is starting to hurt again. Wondering if I should go up to 4 or 5 and then wean again? My Rhuemetologist wants me to start another drug to wean off prednisone but I really don't want anymore drugs in my system. Any advice??? I have had PMR since June 2022. All blood work has been normal throughout?

@ddonnagirl1 - My first time around with PMR it took me 3 and half years to taper off with the last six months going back and forth between 1 mg and 1/2 mg until I could finally stop with a minimum amount of pain (less that a 1 or 2 on my personal pain scale) when I woke up and would get better once I was moving around. I also used the less than 2 on my pain scale when tapering. If it was time to taper and my pain was up I would try another day or so on the same amount of prednisone to see if it got better. If not I would go up half of my previous dose so that I was still making some progress from the previous taper if that makes sense.

The 1 mg tablets are not too hard to split if you have a good pill splitter. Have you tried splitting the 1 mg tablet?

Yes I have and I have a few 1/2 mg from tapering before. So I’m hearing to up it a half a mg and see if that helps? How long should I wait before dropping that half again?