How to address PMR pain while decreasing prednisone

John..

In reply to @rearea1 "My PMR began in the summer of 2017 as I was under..." + (show)
A little update and question: as I mentioned above, I did faint & fall back in August. I hurt my back and had it treated by chiropractor and massage therapist. My inflammation levels went way down when working with a healer.
Now my mid back muscles (between waist and shoulder blades) and extending around to sides and ribs, are tight as a drum and go into spasms. Getting in and out of bed is difficult..as is the simple act of turning over in bed. I’ve been cutting back gradually from 7 mg Prednisone and now are on 4. Could the reduction in medication be the cause of this new muscle pain? Has anyone else experienced this?

@rearea1 - I have experienced more pain when I tried to taper off of prednisone too fast. I had my best results when I was under 10 mg dosage by going down 1 mg per week. Even then when I got to 1 mg and tried to go off I had to go back and forth a few weeks between 1 mg and 1/2 mg until I was finally able to stop. I never experienced spasms though but did have joint pain and a lot of stiffness. Making sure I did some kind of mild exercise seemed to help me. I just couldn't over do it.

Thanks very much for recipe...now, just have to buy a blender!

I am a primary care physician and have had PMR for 3 years. Prednisone is the only medication that works for me. I have burst and tapered several times due to flares and am currently at 7.5 mg per day. I am seeing a rheumatologist and have also taken methotrexate and sulfamethoxazole with no relief. I am aware of the potential side affects with long term pred use, but it has become a quality of life issue for me. I am always tapering and got as low as 1.5mg before I relapsed. This is a slow process toward recovery and I’m hopeful I can wean off completely some day. Daily exercise, especially stretching and moist heat offers some relief. Morning stiffness and pain is the worst. For those of you who also suffer from this, don’t despair.

Hello Mooty my name is Beryl....I have had PMR for nine years now and have been to the point of taking two Mgs of preds. I went through a time, as you all seem to do, of tapering down but never have I been without pain especially at night were I take a Norco pill , if I didn't I wouldn't sleep.....
Midway through all this I was put on 60mg again as I was.suspected to have GCA. The biopsy wasn't positive .......now I have been taking 3mg. of preds. for eighteen months and have been told not to lower it ......I seem to be getting slightly better as the months go on but it is a very slow process and I don't seem to be slipping back .....I too hope very much one day to see the back of this thing and I am not the sort of person to despair luckily ......
I am fortunate enough to be in Sicily for three months getting away from the rain and cold at home in Oregon .....I somehow made the journey which was a tortuous at times but it was worth it and funnily enough although my muscles were swollen ,not my legs themselves, and it didn't put up my pain ratio as in previous years,.....I am looking at that as a very positive sign .....Beryl

I was diagnosed with PMR ih my hips about 2 years ago. After the diagnosis, I was on decreasing dosages of Prednisone for over a year, but the pain always came back. My rheumatologist suggested that I try Plaquenil to avoid the affects of being on Prednisone for the long term Do any of you have experience with this drug? I am on 200 MG right now, but still have some hip pain - but not all the time. Don't want to increase dosage as this med can be bad for your eyes. I'm trying to figure out why the pain comes and goes - like does it have anything to do with drinking alcohol, foods with high fat content, etc? BTW, I have gotten amazing pain relief from high quality CBD lotion, which I put on my hips if the pain wakes me in the night.

Unfortunately, I had an allergic reaction to plaquenil when I tried it years ago. My feet and hands peeled terribly. My skin would just peel off. I hope it works for you, because I know how toxic prednisone can be.

Hello @awag, Welcome to Mayo Clinic Connect. I also have PMR but it is currently in remission. I have had 2 episodes. The first lasted about 3 years and the second about a year and half. I was started on 20 mg prednisone for both occurrences and was able to taper off with pain at a minimum. The key for me was to maintain some level of activity or mild exercise while tapering off of prednisone and to accept a little pain. The little is subjective for all of us. I have no experience with Plaquenil but hopefully other members can share their experience with you.

You've asked the question that a lot of us would love to know - why does the pain come and go? I'm guessing if they had an answer for the question we would all be doing the happy dance and PMR would be on it's way out the door.

My PMR has mostly been in the hands, arms, shoulders and joints/legs - stiffness with a lot of pain when it was bad. It sounds like your PMR is only in your hips? Has your doctor ruled out any other causes for the hip pain?

Yes, I have had MRIs, X-rays and physical therapy (including dry needling, which set my condition wild). No evidence of anything amiss. My diagnosis seemed to be a process of elimination. The fact that the pain went away so rapidly when I took Prednisone, can came back when those effects wore off, was the main basis for my diagnosis. My pain is worse when I am still for periods of time. Have recently started some mild exercise, which I hope helps.

No side effects so far - thank goodness. My ophthalmologist ran all sorts of base line tests, which they say is part of the care of patients on this med. With my low dosage, they didn't seem to be too worried, but want to run annual tests, just to be sure. I'll admit, though, that I do miss the prednisone, as it is the ONLY thing that completely eliminates the pain...