I think I have PMR and I’m terrified

@stonewheel thank you!! I’ve been in full doom-spiral mode today and your message really gave me a huge lift . I’m doing 20mg for a few more days and then I see the rheumatologist again. My symptoms have improved dramatically although it’s a sort of mixed blessing as now I know I certainly have PMR!! I guess that’s the first bridge to cross. It’s so inspiring to have joined this support group and has totally restored my faith in the human race ! Thanks again and I hope to stay in touch and eventually start passing on positive encouragement to others who get this nasty shitty little condition !

@jeff97

"I think not being able to exercise hard was an indicator of adrenal insufficiency. It is like pressing hard on the gas pedal of your car and nothing happens."
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I think you are right. I don't think a year or two of prednisone at PMR doses does too much harm. I would consider a year or two to be relatively "short term." Maybe that time frame with relatively lower doses decreases the time needed for the adrenals to recover.

Adrenal insufficiency causes exercise intolerance because the body cannot produce enough cortisol to meet the physical stress of exercise. Muscles weaken very quickly and energy reserves rapidly decrease leading to severe fatigue during or after physical activity.

Exercise intolerance was my single biggest somatic complaint on a low dose of prednisone when I was trying to taper off. I would get exhausted with minimal exertion. The worst advice I received was to take more prednisone which didn't help my adrenals to recover. More prednisone would make me "feel more normal" but my endocrinologist told me "normal people don't take prednisone to feel normal" unless they have adrenal insufficiency.

Actemra had PMR well controlled so that wasn't the problem. It still took me a long time after I tapered off prednisone but I gradually felt more normal. I'm adjusting for being 20 years older and out of shape--big belly which I still need to overcome.

I told my physical therapist how much improvement there was in my "recovery time after exercise" as well as being able to exercise longer.

@martyn

"Then my doctor said, “Slow down buddy. We don’t want you taking that much for too long.”
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Thanks @stonewheel ---- Best advice ever! Stressing over it just adds fuel to the fire. You are relatively new ... how are you doing?

Everyone will be fine simply because we already know more than I did when I was first diagnosed. Take the prednisone... get PMR under control and into remission... then taper off prednisone. Just don't take prednisone too long but a couple of years at lower doses should be okay. The jury is still debating whether or not 5 mg or less does much harm.
https://www.everydayhealth.com/rheumatic-conditions/tapering-off-steroids-when-you-have-polymyalgia-rheumatica/

@dadcue I found that my metabolism only returned to normal about a month after I finished taking prednisone. While I was taking prednisone my metabolism felt sluggish, and I never knew what to eat or how much. After I recovered it seemed like my body started digesting food effectively again and burning off excess energy, instead of storing it away as fat. That was the biggest problem for me of low dose prednisone, plus the exercise resistance we discussed.

@dadcue (and @martyn FYI)
As you know, I started feeling it this time last year.
Toughed it out until October. Began 40mg Prednisone late Oct.
DVT in December.
Rheumatologist got Kevzara approved end of January due to DVT.
Fast taper began in April.
Down to 5mg in May.
It’s the end of August and have been taking 1mg for more than 2 weeks. Loaded weekly pill box this morning alternating 1, .5, 1, .5mg… every day for a week.
Next week all .5mg and 0mg after about 10 days.
Goal was to be off Prednisone by Sept. 1, but probably won’t happen until mid Sept.
Tried Kevzara at 3-week intervals in June-July, but that didn’t go well. CRP rose a bit and I felt it.
Sticking with 2-week self injections (no pun intended) until the end of the year 2026. 2027 will reveal itself.

@martin, I treated this, PMR, like it was boot camp. Learn all you can and apply what you learn. You know the goal. Set small goals to get there. There is plenty of help here.

@martyn Best line is “manage my expectations “……you nailed it.

@pokey
Kevzara is also allowed for patients unable to take prednisone due to secondary disorders. I was diagnosed with SMM two months after my PMR diagnosis. My SMM can't be properly monitored while on prednisone because it suppresses the results of a bone marrow biopsy.

@dave923 Thanks Dave. Great to hear accounts of people still doing striong rides despite PMR and Pred....I'm only at the very beginning of this but ewill heed your example. One question....I feel that 20mg is quite a stroing initial does for me, although that being said i think to some extent that';s just to prove i have PMR as I said in my original post. My sypmtoms have vanished. I'm not delusional but i hope that maybe like you I can start at something lower like 12.5mg. I just feel that starting at that reduces the tapering time. Or is that just too simplistic. I guess the body will tell you?

@dadcue I may have mentioned before, not sure, but my Aunt, who turns 91 next month has been on 4mgs pred daily as a maintenance dose for over 20 years for PMR. My rheumatologist has told me 5 mgs and below is a common maintenance dose not just for PMR and GCA like I have but many other autoimmune diseases. I'm at 6 mgs trying to get back to 5 after a flare and if I manage to get there I will stay there for quite awhile. My bloodwork is overall stable but have awful fatigue which I think is from the adrenal glands trying to wake up.

Hi Martyn: I was diagnosed in July 2025 with PMR. I was then 54 years old and a very active Asian female. After doing a slow, prednisone taper, I finished in May of this year, after 11 months without any relapses or flares. I am now in remission. I also lost 4 pounds while on oral prednisone. Initially, both my rheumatologist and primary physician kept insisting that I did not have PMR due to my age and the fact that all of my inflammatory lab results were normal. However, I had all of the physical symptoms, including bilateral hip girdle and shoulder pain, muscle stiffness, shoulder bursitis and chronic fatigue. After x-rays showed I did not have arthritis in those areas, I asked my rheumatologist to prescribe oral prednisone for my symptoms.

I don't believe your 20 mg is too much. The dosage you are likely given is likely based on your weight. I was 107 pounds and 5 foot two and my doctor prescribed 20 mg to start with. She wanted me to be off prednisone in three months and I refused as research shows that an abrupt, fast taper will lead to relapses and flares.

I practically designed my own treatment. Within 48 hours of taking prednisone, all of my symptoms went away, except my pre-existing back issues/facet arthrophy and mild right shoulder bursitis. I then tapered down to 15 mg after two weeks, then down to 10 mg another two weeks. After that, I reduced my prednisone dosage by 1 mg per month which is why it eventually took me 11 months to taper off prednisone. I also continued with my physical regimen, including light weight training, core exercise exercises for my back, walking, etc.

I was fully aware that one of the side effects of oral prednisone is it makes you feel hungry even though you are actually full. I became very aware of my hunger pangs and ate as healthy as possible. Because of the prednisone, I became prediabetic and my cholesterol levels increased. I did not take any medication for those, but I managed them with my food choices and intake, I also had disrupted sleep and slight hair shedding. All of the prednisone side effects disappeared, and leveled back to normal when I tapered off prednisone this May. Throughout my prednisone treatment I asked my doctors to order labs/blood tests (sed-rate, CRProtein, potassium, lipids, triglycerides, etc) every month at least a week before I tapered down to the lower dosage.

Please do not abruptly stop taking prednisone, even if you think you feel better. That is the absolute worst thing you can do. Stick with a slow taper and, hopefully, you might have little or no flares like myself. Both of my doctors are now fully on board with my PMR diagnosis and the course of treatment I chose for myself. Instead of relying on the inflammation lab results which mine were always normal, we track my physical symptoms and my response to the prednisone.