Why Does the PMR discussion have so many posts Compared to others

@54pontiac

This is a 2-part question. I don't have any good answers for either part.

Part 1 of the question:

Why can't we do a blast of high dose of prednisone for a few days and then stop?
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This was how my other autoimmune disorders were treated before PMR was diagnosed. I frequently took 60-100 mg of Prednisone and tapered off within 30 days. The time varied depending on symptoms and starting dose but 30 days was the approximate time I needed to taper off. After I tapered off prednisone, remission of my other autoimmune conditions was sustained and I stayed off prednisone for about a year before relapsing again.

Why can't we do the blast of Prednisone and fast taper for PMR? It didn't work for me ... I tried. When I told my rheumatologist about doing a blast of prednisone and a fast taper she said, "PMR was going to be a long term proposition and I couldn't take prednisone that way for PMR." Her suggestion was to find a "stable dose of Prednisone that worked" and stay on that dose for awhile before tapering. She said I would probably need Prednisone for a couple of years for PMR.

A couple of years turned out to be 12+ years of prednisone for PMR. I never signed up for 12 years of PMR. Plus.... my stable starting dose of Prednisone was 35 mg which wasn't all that stable. PMR pain was controlled but my rheumatologist was in disbelief that my inflammation markers were still elevated on 35 mg of Prednisone!
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Part 2 of the question.

Why can't we stop before our adrenals have shut down and the side effects have set in?

I don't know. To be honest, I didn't know about my adrenals being shut down by Prednisone initially. I didn't learn about my adrenal problem until about 10 years later. I knew I needed to taper off Prednisone slowly because PMR would relapse if I tapered off Prednisone too quickly. I must have "relapsed" more than 100 times but my symptoms varied and were never exactly like my original PMR symptoms.

My initial symptoms involved pain and stiffness but originally PMR was mostly confined to shoulders until my entire body was in pain. I blamed the total body pain on not being diagnosed with PMR quickly. There was a delay in starting Prednisone. I told a PCP I took prednisone whenever I had pain caused by my other autoimmune conditions. My first PCP said I shouldn't take Prednisone without seeing a rheumatologist first. It took a couple of months for me to get an appointment with a rheumatologist.

Shingles shot on 6/11/24 threw me into RA, PMR, sero negative. But rheumatologists said because I am not “symmetrical” they said I didn’t have either one. Prednisone, methotrexate, kevzara and Humira didn’t help at all. Yes, I lost hair over the course of a year. Yes my shoulder bones are destroyed. Had Reverse shoulder replacement on my left shoulder 7 weeks ago, with right shoulder crying out to be replaced. Now my PCP wants me to see an endocrinologist. Do any rheumatologists have the answer? Will they consult and follow up? Not so far. 😢

I'm going to remember that @tuckerp
My new rheumatologist is good. I actually told her about this site and I'mll mention your self treatment technique. I like the idea of that.
I'm down to 4mg after 9 months. I have some pain, but as long as I can run I'm happy. And I can. Took a hiatus from lowering for 2 months because of naseau. Gone now so hopefully, I can continue lowering.
Just diagnosed with hyperinflated lungs and am going to a pulmonolgist. Maybe asthma. Never heard of that being a side affect.
Ugh
Oh, and I feel like this has more comments because many of us are active and this is an infuriating disease. We are trying desperately tto figure out what causes it to flare. No one wants to be on prednisone. So we reach out here because we don't know others witth PMR.

That is exactly my point. I am wondering if PMR is more than one disease and no one can find the cause of any the the possible disease. I was first diagnosed when I was in my early 40s now I am 80. I saw a rheumatologist who was also board citified in sport medicine. Without knowing what PMR was I recited exactly all the symptoms, of PMR as if I was reading a textbook. I described pain for no reason through my shoulder girdle and hip girdle with fatigue. Without any labs he gave me a Rx for prednisone and told me to let him know how I felt in a week. Within 6 hours of taking prednisone I was a new man. My wife commended without know what had happened that I seem so much better. That was the start of a 40 year experience with PMR and being on and off prednisone, mainly on. I have seen 5 rheumatologist during that time. The second on thought hat I was doing so well on prednisone that he didn't what to change anything. The third one examined me one on one for an hour and 40 minutes and after that time said, "I do not think you have PMR, but I do not know what you have. The fourth one felt I was doing fine staying on prednisone and the fifth and last one didn't think I had PMR and tried many meds other than prednisone that did not work. The he put me on Kevzara. That seemed to work and I had no problem going from 15 mg of prednisone to 2.5 mg. When I went to 2 mg of prednisone I started to have pain again and when I went to 1 mg of prednisone I had a lot of pain, so I am back on 2.5 mg. Maybe I am lucky that I do not feel I have many side effect from prednisone. The main side effect is skin and I bleed easily with the slightest abrasion.

@vjm0223 I would go a month between tapering.

@54pontiac because sadly pred doesn't cure PMR, it simply relieves the symptoms. Stop the pred, and the inflammation will begin to build again, slowly or rapidly depending on how aggressive your PMR is. PMR eventually goes away by itself, they say, but lasts much longer in some than others. They don 't know why.

@tuckerp , I am sharing with you that my husband was diagnosed with prostate cancer when he turned 65. He is now 78. It was caught early and of all the treatment options, he chose surgery to remove his prostate. The Dr performed robotic surgery. No complications He has a yearly checkup with the urologist and thankfully has had a very positive outcome.

I am in multiple Mayo Clinic groups and often the PMR group is the least active. It can also go thru phases of super activity. The majority of the posts have to do with tapering prednisone questions, random symptoms, newly diagnoses and wanting to know what to expect, PMR flares and a few other major topics. I have been on Mayo Clinic Connect for years and PMR activity can go down to only a few posts to numbers like we are seeing this week.

I'd never heard of it and this is the only place anyone knew anything - other than my doc, who was great.
Also there are these new treatments with wide ranging responses.
I'm off prednisone and on Kevzara only now -- and experimenting with weaning based on someone's experience here.
PMR is unpredictable- so it has kind of a Wild West feel to it!

I was on prednisone 5mg for 5 months, tapering off the 6th month. No relief whatsoever in my excruciating RA/PMR pain. I am always in “flare”. I am so disappointed with my rheumatologists. (I am the one who took the shingles shot that has caused such bone deterioration I had my shoulder replaced, with the second one asap.).
To the writer who has saddle/hip pain did you also get upper arm/neck pain?