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

Hi @kvd9 I don't think you can go wrong with a referral to a rhematologist. She/he will probably be your long term physician and monitor you through this. Also, has anyone warned you to watch for symptoms of Giant Cell Arteritis? About 30% of people with PMR develop it and it's nothing to mess with - it can cause stroke or blindness. I had full blown PMR for 3 mos and my inflammation markers were only slightly elevated - so I waited another 9 months to be diagnosed and then my ESR and CRP scores were very high. The PMR symptoms receded, but then the Giant Cell Arteritis symptoms kicked in. I wish you the best!

Thank you for your help, I will try to get a referral from my gp.

A few points that may help you sort this out. 15-20% of people have normal blood markers when diagnosed with PMR. Also, prednisone can affect your inflammation blood markers. PMR pain and ESR/CRP don't necessarily correlate. It's PMR pain that let's you know the amount of prednisone you need. According to Mayo, PMR lasts for 5.9 years on average. If the pain is back, you likely need to restart prednisone. If it's PMR, living with it without prednisone will be difficult or impossible. It's important to educate yourself. There's a lot of misinformation out there even in the medical field. I've found "healthunlocked" PMR group out of the UK to be a good resource. https://healthunlocked.com/pmrgcauk/posts

I came down with PMR December 2021. My CRP marker was 58. Primary gave me Methylprednisolone 6 day pack starting at 24 mg, reducing by 4mg each day. Then finally I could see Rheumatologist in January who put me on 12.5 mg of Prednisone which I took at night (my decision) because the pain was so bad at night and morning I thought this would be better. It worked pretty well (pain level 3) except I was awake ’til 2am. 
I went for second opinion with new Rheumatologist this week and he increased my dosage to 20 mg and to take it in the morning. Now I am much worse again in the morning. Pain a 7. He is perplexed.

He did answer one of my main questions though: should we be treating PMR with Prednisone so that all pain and stiffness go to a Zero? - the answer is yes - getting to zero pain/stiffness is the goal and then to taper off the meds. So we are trying to figure out the right dosage for me. I am 121 lbs. He does not seem to want to go above 20 mg Prednisone yet. My CRP levels went from 58 (no meds) to 11 to 14 and now 17.

So since I had good results with the Methylprednisolone fast 6 day pack (until I hit 12mg), we are going to try going back on that medication now. I am taking 16 mg of Methylprednisolone each morning (this equates to 20 mg Prednisone). It's only Day 2. So far I am noticing it is working better for me than Prednisone but I am still achy in the morning (a 4- 5 pain level). I go back to see him next week and he said he is going to talk to me about potentially adding Methotrexate. But I want to ask why we don’t bump it up to 24 mg of Methylprednisolone because that worked for me originally. But he’s the expert.

Is anyone else using Methylprednisolone instead of Prednisone and noticing any difference or high success? How about Methotrexate?

Hi, I'm also in the process of tapering off prednisone and found that I need to go more slowly than my doctor initially recommended. I was on 15 mg and tried to go down to 10 in one step but within 24 hours I was in a lot of pain. So I went back up to 15 and have tapered back down to 10 by first going to 12.5 for a week, and then even cut my pills up so I was at approx 11 mg for a week before getting to 10, without feeling any increase in pain.

Thank you so much for your reply, I am going to look at that site now. I can see that I have to talk to my gp again. This time I will bring this along!!!

I am a 75 yo male who has and continues to exercise at an elite (nationally rated) level. I have been involved in sport continuously since I was a child. When I was about 45, about 30 years ago, for some reason I didn't exercise for about 5 days and noticed that I had what I thought was generalized pain through my shoulders and hips for no reason at all. I had probably had this pain for years, but blamed it on my daily, but extensive exercise schedule, which I obviously love to do. I went to a rheumatologist with a certificate in Sport Medicine and apparently without knowing what polymyalgia rheumatica (PMR) was gave him a textbook description of the disease. He Rx prednisone (pd) 10 mg per day for one week. Within 6 hours of taking prednisone I was a new man with no pain. The results we so obvious that my wife noticed the difference before I told her what I had done.

I tapered off pd over a period of months and was fine. The problem was PMR came back about a year later. I went on pd again and tapered off again over a period of months. I was fine for about a year and then PMR came back. This process of returning PMR went on for about 10 years with the recurrence period of getting PMR getting less and less.

About 15 years ago, I then went to another rheumatologist who did an extensive physical exam and finally told me he didn't think I had PMR, but didn't know what I had.

About 10 years ago, due to the continuing recurrence of PMR I started going on 2.5 mg of pd on a daily basis and this for a few years stopped the recurrences of PMR.

About 4 years ago I had my genome sequenced by Illumina for no special reason and discovered that I had a variant of “unknown clinical significance but suspicious for pathogenicity for calpainopathy.” Calpainopathy, or limb-girdle muscular dystrophy type 2A (LGMD2A), I have is due to variant v.338T>C (p.lle113Thr). I really do not understand what all these letters and numbers mean.

Just after having my genome sequenced I visited another rheumatologist about any possible connections between the variant I have and what I and others feel is a strange presentation of PMR. He didn't want to do anything since the 2.5 mg of pd per day seemed to address much of my pain at that time.

I currently have constant pain for no reason in my shoulder and hip girdle area even while I type this note. My sedimentation rate has never been elevated and my C reactive protein is usually around 1.

Should I just consider myself lucky that I am not in a wheelchair as most LGMD2A patients are, or is there anything I could do to stop the pain. I am also on Aleve 220 mg twice a day. I consider myself very healthy but for the pain.

Your body will determine your tapering plan. Once you get to 10 mgs. don't reduce more than 10% at a time. I typically drop by half a mg. (say to 9.5 from 10) and stay a month to make sure I'm okay. Your objective is to find the lowest dose where you can be reasonably comfortable. This approach helps to avoid yo-yoing.

Both shoulders?

Yes, and I am right-hand dominent. The pain is across my shoulder girdle and pelvic girdle. My pain has been classic according to the textbooks from the beginning 30 years ago.