Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

I have been on prednisone for 10 years 2.5 to 5 mg and do not have Achilles tendonitis.

Good Morning, I was diagnosed with PMR one week ago and today I began 20 mg of prednisone along with calcium and vit. D. I am a very active 76 year old woman who hikes, walks, plays golf, exercises, takes yoga classes and eats a relatively healthy diet. I have no underlying health conditions. Needless to say i am a bit flummoxed and depressed about this diagnosis. I am willing to go all in on the Mediterranean Diet and take prednisone for a time. I don't have any questions right now (as i am a newbie) but wanted to thank all who contribute to this forum. I will keep you posted on my progress or lack thereof. I am sitting here waiting for prednisone to take effect. Liz

I took it without any problems.

I was diagnosed with PMR in late November. I started on 20 mg of Prednisone. I’ve tapered off to 8 mg over the past six months. I’m traveling in India for 3 months and have been trying to continue to taper down but am stuck at 8. Tried to go down to 7 but after 7 days of pain reluctantly went back up to 8.
I have an ulcer from the prednisone even though I’m taking medication for it. My body shape has changed. My sleep was impaired but at 8 mg that’s pretty much returned to normal.
I was confident that I’d be down to 5 mg by my next rheumatologist appointment in August and still hope so but am less confident.
Being on steroids seems like such a health detriment but I don’t want high pain levels to mean not enjoying my life either.
Btw, it never occurred to me that once I put this behind me it can recur. It seems like that’s the experience of many of you in here,
I’m a 70 year old yoga and meditation teacher. I have my own small studio where there are 3 other teachers. I have 5 married children and 16 grandchildren and have always led a very active life.

Settle back, this is going to be a long post.

Just joined after reading numerous posts over the past few years. They were informative and helpful.
Those posts dealing with medical care providers who refused to even consider PMR or claimed they had never heard of it are disappointing in the extreme.
I have noted on several medical sites that seniors in Florida seem to experience an inordinate amount of trouble with their primary care providers. What is with doctors in Fla?

OK, in order that that someone may profit from learning about someone else's PMR experience, here's mine:
I am 84; my BMI is 22.9; BP at last physical was 70/130; A1c is 6; only medication is a 10mg statin; triglyceride/HDL ratio is 0.63; and I have a moderate level of arthritis in my knees, shoulders, and hands.
I workout every day: one day for one hour on a rowing machine; the next dayI do a set of stretches, planks, dead bugs, push-ups, slider exercises that take about one hour.

Every thing was just fine until I had what I thought was a flareup of arthritis in one shoulder so went to see my doctor who suspected it was arthritis and it would probably resolve itself. I was taking Aleve and it provided some help. (I kept a running log so I am going to cut and paste from that log into this post).

13 April - The shoulder pain has not abated. It became bothersome enough for me to see the doctor today who sent me for an X-Ray of the left shoulder. Also, at the same time, I had a flare up of arthritis in my left knee which became noticeably swollen.

The findings of the X-Ray were: There are degenerative and hypertrophic changes involving the joint. Osteophyte projects off the inferior medial left humeral head. No glenohumeral dislocation. No identifiable fracture or calcific loose bodies. No bony erosive lesion. No bony lytic or blastic changes.

25 April Saw doctor again on and he gave me a cortisone shot in the left shoulder which provided only very slight relief. The discomfort is greatest when I push my elbows back to place my hands in my pockets or when pulling on my trousers. Pain in the shoulders continues as does the pain in the left knee. Left knee pain disturbs my sleep and I am unable to exercise: no rowing, no cable exercises, no long walks.

May. Began four weeks of PT . Have twice-weekly appointments and at-home, twice-daily exercises to perform. After two months and of twice-weekly visits + doing prescribed exercises twice daily, I see only moderate, if any, improvement.

20 May - Last few days the knee, while still swollen, has greatly improved. Have continued to ice it, but not as frequently. Shoulders, on the other, show no improvement at all; some days are better than others, but no days are completely pain-free. Had a particularly bad night’s sleep on the night of 20/21 May because of shoulder discomfort.

This is getting too long, so I am going to cut to the chase.
In July, my doc referred me to an orthopedic surgeon for a second opinion and shoulder x-rays. His diagnosis was arthritis.

In Aug., I went back to my doctor and asked for a referral to a rheumatologist. He said first we had to establish what level of inflammation I might have. Drew blood, got the results back: Rheumatoid factor was 11.4; Sedimentation rate was 32; C-Reactive Protein was 15. The first one of these is considered high, the latter two, very high. He called back the next day and said he was almost positive what I had was Polymyalgia Rheumatica and put me on 13mg of Prednisone daily, with instructions to reduce it 1 mg a month and come back in two weeks. Relief was immediate; I got up the next morning and my shoulders were back to normal!
Two weeks later at another appt. he explained that I needed to take Fosamax to counter the bone loss caused by Prednisone.

I have been reducing the dosage as prescribed then in March of 2023, I had pain at the rear of one ankle and a week later the exact same on the other ankle. I was reduced to a shuffling old man in one week!! Doc diagnosed it as bilateral Achilles Tendonitis. Another medical professional suggested that I up the Prednisone dosage back to 10 (I was on 4mg), but 10 days later, no improvement.
A physical therapist noted that one side effect of Prednisone is tendon pain and suggested I drop the dosage back to 4 mg which I did several days ago and now the so-called Achilles Tendonitis is definitely improving.
I guess I am lucky that I have not suffered any of the many side effects I have read about here and on reddit: weight gain, anger, moon face, etc., etc. I have gained 5 pounds, I sleep well, no moon face, etc.
So, that's my story. Hope this may be of use to anyone reading it.
Happy to answer any questions.

When my Dad turned 80 and I was in my mid 40s, he complained about how stiff he had become. I thought to myself, "I feel like that now!". My point? We all age at different rates and I would say that, at 84, you are doing pretty well. Not that that is any consolation. Tendonitis can be very limiting and inhibitory. Generally, it sucks. But it has to rest to get better so give yourself permission to do just that. When you do get active, listen to your body and don't push. That's about all any of us can do.

I liked the advice from my physical therapist when I asked her if I could resume rowing. Her advice? Listen to your body. If anything feels worse after rowing, stop doing it. Actually, after rowing it seems like my Achilles tendon is just a tiny bit better/more flexible and so I continue to row.

I have an extreme shoulder issue - can’t lift my arm or stretch it out. Rotator cuff? Tendinitis? Who knows! And it started shortly after I was finished with the prednisone but I still have “girdle”pain as well.

Would you kindly explain what is the difference between this group - Polymyalgia Rheumatica (PMR): Meet others & Share Your Story - and the PMR Support Group?
Many thanks.

I started on a high dose, 20 mg. The thing I did that my doctor said was unusual and probably helpful was I force myself to exercise every day. For at least an hour, I would kayak, walk, or bicycle. Over the course of 12 months, I tapered off every couple of months by small amounts until I was on just a couple of milligrams. But even at the end, when I was down to about a mg every other day, I did feel a difference when I stopped completely. But it didn’t last more than a day or two. Maybe exercise and tapering little by little?