Do I really have PMR?

Thanks so much for the information. I'm on 40 mg right now and hoping the progress continues. Third dose this morning. I'm sure I will have to go through the weaning process at some point. Just the ability to do some things that just last weekend I could not is such a relief. For 5 months it was like I had no hope. Couldn't get even my family doc to listen. I could have been on this when I suggested to him that it could be PMR. That's when he referred me to the neurologist at end of November. Considering this is Canada, I got in very, very quickly. Oh well, at least I can look forward with hope now. I so appreciate this group and your comment. All the best to you....

Sorry for your delayed treatment and glad for the relief you now have. Just a word of caution: Once we get relief, we think we can go back to our former activity level. Remember the disease is still there, just being covered by prednisone. Reducing stress, limiting some activities, and eating well are all necessary to ensure continued quality of life.

Hi. I'll defer to the support leaders and others for verification/opinions, but my sense is that most rheumatologists are well aware that about 20% of all PMR patients test within normal ranges for Sed Rate and CRP; especially after being put on a taper of prednisone. One thing that I have learned over the past three years is that for many sufferers there is no direct relationship between Sed Rate test and pain. I suspect that many doctors want to correlate them so as to rationalize their diagnoses and treatments - but they will be in serious trouble if they try to posit that my pain over the past 2 years has been more in the head than the shoulder gridles.

Like so many members, I was hit like a lightning bold of hip and shoulder pain (throw in some carpel tunnel symptom's) around May of 2019. My primary care doc did the blood work which revealed a sed rate in the 60's - which is not astronomically high and put me on a prednisone taper before the blood test came back. He correctly predicted that even the carpel tunnel would go away. As with so many of us, I felt much better in the first 8 hours and great the next day. Before that I could not get up from a chair without a hand-hold and could not take off a tee shirt.

But the take-away is that I have had dozens of monthly sed rate and CRP tests since then and every one of them came within range. Currently at 2 mil. per day, I have some manageable shoulder pain but am determined to get to zero. As we say so often, this is my story and does not go for anyone else, but I'll bet it will engender some resonance (or disagreement). Either way, good to air it out.

Stay well and best of luck.

I took Prednisone for Lupus for 5 years. Might check for that or I've taken it for many other inflammatory issues.

Hello. Sorry you are suffering. I am literally going through the same thing. Even the er sent me away 😩 . I had my blood checked again yesterday, and this dr told me to go see a psychiatrist 😢
I’m devastated. This pain and headache is not in my head. Is yours? Or maybe we are all crazy.

Well said. My last Dr told me to see a psychiatrist because there were no markers. I’m devastated 😢

Where do you live? I feel so bad for you. Thank God I have a young Kaiser PCP that knew it wasn't just "old lady stiffness". I suggested PMR first but he jumped on it and ran tons of blood test. Eveything normal except CRP was 98. In my 3rd week of pred and starting a slow taper next week. It's a lifesaver!

I’m near Philadelphia. I’ve been to 7 drs already . All of my levels are normal because I’m currently on hydrocortisone but I still feel awful. My next appointment is with University of Pennsylvania group that specializes in PMR and maybe an endocrinologist….
I was lucky enough to score a low dose of prednisone to last 30 days

I am so sorry to hear that doctors are not listening to you. I guess I was extremely lucky when my PCP diagnosed me in one visit 2/21 (I had symptoms for 3 months before that). I had 8/10 symptoms not including the lab which wasn’t done yet. The CRP was elevated. I was started on 15 mg and now down to 2 mg. At 2 mg is the first time I’ve had symptoms present themselves. So trying to decided if I can put up with them(increased stiffness in hips and hamstrings) or up my dose to 2.5 or3.

Hi @dmoonchild, the chapter on Giant Cell Arteritis and Polymyalgia Rheumatica in Cecil and Goldman's Textbook of Medicine has a diagnostic algorithm for PMR, CRP (c-reactive protein); GCA. If elderly patient presents with symptoms, after exclusion of alternative explanations (Malignancy, infection, connective tissue disorder) , check for elevated sedimentation rate/CRP. If no, it advises "consider diagnostic trial of corticosteroids, prednisone 15 - 20 mg. " Can you ask your doctor to do this or find a physician who will? Have you been seen by a rheumatologist? In addition to headache, do you have a tender scalp, trouble with your jaw when eating, vision problems, fatigue, lack of appetite? Those could be symptoms of Giant Cell Arteritis. I had symptoms of PMR and GCA for a year before my inflammation markers were elevated. Luckily, I had a physician friend who listened to my symptoms, checked my test results and encouraged me to pressure my PCP for the proper tests. Sometimes we just have to keep advocating for ourselves. It's difficult and often discouraging. Don't lose hope.