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

I have normal blood work but have had PMR symptoms for the past year - my rheumatologist says it's osteoarthritis (which I have) but I think it's PMR - suggestions?

I take my Prednisone at 10.00 at night.
Am on 4mgs tried reducing to 3.5 ,had to go back to 4mgs.
Will try reducing in a few weeks,have had this for two years.

Like you, I have had the PMR symptoms for more than 2 years but normal blood work - except at very beginning. I tell rheumatologist that I must be in the 20% of folks with PMR but normal inflammatory markers. He seems to think it’s more like 5%. But Rheumy Handbook seems to attest that if you rule everything out and Prednisone taper produces immediate response, it’s PMR. Of course we are all different. Hope this helps or engenders further dialogue.

I am walking into my fourth year. Although my inflammatory indications are very light I still get stiffness and pain, but thank goodness not much. I started getting better when I took my diet seriously. I used to believe I could eat small amounts of the forbidden foods with no problem but as I wasn't progressing I started to take what I ate seriously. My diet is boring and bland but I was able to go down to 2 1/2 prednisone and it looks like I can reduce again soon. PMR isn't something to treat casually. It pays to take notice of everything the medical people tell you about diet and pull up the big persons panties and do it. There doesn't seem to be any easy way out of this.

Have any of you had covid during PMR treatment? I am on Prednisone and Methotrexate and my rheumatologist suggests stopping the treatment. I don't know what will be better, hold on to the cough or the pain from the PMR.
Any suggestion?

This is the second time in 5 months I have tapered down to 2 mg. The first time resulted in a flare up with my inflammation markers rising, but this time has been more successful. I hope it goes well for you.

Hello again, I remember having awful pain early on in my treatment. Had problems getting in and out of bed and even turning over. Most of the pain was in my bicep and pelvic girdle areas. I also developed gout without realizing it and then had a jolly old time limping to the toilet, almost falling in and then in agony trying to stand! I think for most of us the memory of that pain keeps us clinging onto each last mg of that Prednisone even though we hate it. I know I have developed a new understanding of people becoming addicted to pain killers.

Even though I have a happy disposition, there are times when I'm just fed up with it. Before this, I was a volunteer docent at our State Museum but have had to put it on hold because tours start early in the morning when I am not at my best. There are so many things I still want to do, but I'm doing them in moderation now. I'm even taking my grandchildren to Pompeii this summer and ignoring the fact that I may not be able to keep up with them. I'll just look out for a handy uber chariot!

You really haven't supplied much information, but I'll try to help a little. I suggest you Google "Sick Day Rules for Adrenal Insufficiency". It's from the UK's NHS, Dept of Endocrinology. Generally speaking, if you are on long term steroids, your adrenal glands are not working - unless you are almost to the very end, and maybe they are starting back up again. But even if that's the case, they are probably not working well enough to handle extra stress to your body from illness. Usually, the doctors will advise upping your steroid to help you get through your illness. Don't know what your doctor is thinking. Might be something going on there that I don't know about. When I had Covid in May of last year, I was on 6 mg of Pred. I had a mild case of covid, but the doctor wanted to take me off of pred and put me on some other steroid. I bargained with her, and we just upped my prednisone by 5 mg. for about a week and a half, and then I was feeling really well, and I went back down to my usual 6mg in 2 steps - very quickly. Maybe your doctor just means the Methotrexate??? I'm pretty sure it's recommended to get off the Methotrexate for a short while prior to the covid vaccination. You need to check with your doctor again or perhaps your primary care doctor?

The NIH and Mayo Clinic are two sources that report that it is possible to have PMR with normal inflammatory markers. Look them up, print them, and bring them to your rheumy. Ask him to put you on some prednisone for say 2 weeks, and see if your symptoms disappear. Of course, it needs to be "enough" pred to do the job. If it works, I think a lot of doctors would concede to your diagnosis. Probably 99% of us "old folks" have osteoarthritis along with our PMR. Of course, I'm making this suggestion without knowing much about you. But I think the suggestion I'm making is reasonable, don't you?

You are absolutely right, sometimes one is so overwhelmed that one forgets to put others in context. I was diagnosed with PMR in December I started Prednisone 20mg and Methotrexate 15mg. I am now on 5 mg of Prednisone and 15 of Methotexate. When I asked the doctor's office what I could take in case I felt bad, they told me to stop the treatment. With all that I have learned here in these 3 months, it seemed illogical to me that stopping Methotrexate would be reasonable but not Prednisone. Thank you very much for the article. I hope the googel translator did a good job this time.