The good and bad of Prednisone for PMR

You have been through a very difficult life journey. I admire your inner strength. The value of quality of life has been mentioned often on this website. Those words hit home with me and it made a difference in my perspective on reducing prednisone too quickly. Your decision to pursue your own quality of life in spite of severe health problems is inspiring.

I also had a baby at age 42. Because above all things, that's what I wanted to be, a mother, since I was a small child. You can probably imagine the silent panic of my OB/GYN's when I present at 4 months, in his office. She turned out just fine and I think your words are some of the nicest, kindest, best feedback I've ever been given. Thank you.

That must have been horrible, breaking both feet. Were you totally immobile?

Not with the broken feet. I spent 3-4 months immobile the winter before, for another reason. For some reason, when I break bones, it never shows up on X-rays until like a month or more later. So, I had to walk on them. I could literally feel the bones in my left foot move when I stepped down on it. I had a small child. Doing nothing was not an option. Her Dad had died in 2002 so I was a single Mom by then. I did have a car though. And I had a borrowed electric wheelchair to move around in my home with. When I got to WA, and finally into pain management, they didn't even check what was putting me into so much pain. So, when I was referred to a foot surgeon, he of course did xrays, and boy was he mad (at my doctors). He gave me orders to tell them he wanted one of my doctors at PM to call him, that day. He insisted I do that. So, I did. And everyone was real good to me there, from then on. The good doctors do shine, don't they?

Oh, I forgot. That foot doctor put me in a walking boot that same day.

It's not nasty; definitely a miracle drug for me because I could do literally nothing prior to my diagnosis in Jan. 2022. The difficult part is the side effects and weaning down. I started at 20 mg Prednisone and now this week at 12 mg. (after 7 months). Tapering at .5 mg every two weeks seems to be not so bad actually. But I have put my lower back out and that's very painful. I don't think we tend to be complaining about the Prednisone, but it is a very difficult drug to reduce; given the quality of life it brings back to us. It has effected my eyes (had to get new lenses); the shakes, brain fog, thin skin, etc. All the best to you my friend.

I’m leaving this group because I am the person who did not respond to 65 mg of prednisone. At that point one is seen as refractive and non-responsive. A good doctor started hunting for the real source of my PMR type pain and discomfort. Answer: Lumbar Spinal stenosis between L4 L5. I will have spinal fusion in the Fall. This was my first experience with a medical interest group. My impression is that PMR has low to no real evidence based medical research. The Rheumies don’t do research OR even read the research that has been done. Is this because our cohort is over 70 and mostly female???
There is way too much finger pointing at a proximate cause. The door slammed and I got a flare. Therefore door slamming is causal for flares. PMR sufferers are not being served well by the scattered and unscientific approach all the different doctors take. This is American Medicine at its worst.

@johannab First I wish you well with your surgery and recovery. I indeed hope you fully recover and go on to live a pain free future. During my journey with PMR I learned that there are cases where administering steroids is diagnostic, meaning if you do not respond as expected then you don't have PMR. This sounds like you. You were very fortunate that you have a doctor who took an interest and did the research.
Secondly, I could not agree with you more about the lack of medical knowledge around the PMR symptoms and treatment. Currently there are no medical PMR trials going on. I'm not able to find a single double-blind study on PMR at the National Institute of Health. Personally, I believe all this points to Big Pharma not seeing a potential profit if they devote research dollars to PMR. Medical research is not lead by doctors but by Big Pharma financing, they are the ones who decide what research gets funded. It is a sad, sad reality.
Lastly, whatever PMR is, it causes pain, interrupts lives and families as well as limits quality of life. Doctors are simply humans like the rest of us and blaming them for not solving a problem that has been around for decades and is not funded to study is not helping get us where we need to be. Doctors drive me crazy but I need them more than not. I'm sure they would say the same about their patients. In the end it was a doctor who helped you.

@johannab, I'm happy to hear they finally got to the bottom of what was causing your PMR pain. I don't think it's that it's American medicine at it's worst but rather a lot of different conditions that have the same or similar symptoms of PMR. It is like @jabrown0407 mentioned, part of the diagnostic if PMR is suspected is administering prednisone. I also think this is why we have to be our own advocate and learn as much as we can about our symptoms and conditions.

-- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

Hoping all goes well with your spinal fusion in the Fall.

I have been on prednisone for eleven years. I started at 10mg and went to five. My bone test I just took came back good. I am over weight. I am in a lot of pain all the time. I can hardly walk without prednisone. I am 77 years old. I also have Fibromyalgia. I just moved to a new state and will be seeing a new doctor next month. I have trie many of the newer drugs out there, nothing worked. I am active for my age, and I know I over do It.