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

I'm hoping for you that even if PMR is technically a likelong, chronic condition, that the Pain from it won't be lifelong and chronic. (And I'm not saying that to negate that it's discouraging...because that is true too!)

Last night I woke up with pain for the first time since starting the drug regime, all down the side I was sleeping on. Today I developed a headache and some slight jaw pain so I'm sitting here worried that I have developed GCA. I emailed my dr (who so far is very responsive) and will call there in the morning. I am trying to take in how quickly my life has changed. I just moved to LA from Portland, OR to be near my son and family and feel bad that I landed here with something for them now to worry about with me. They have a one-year old baby so are swamped with all that new activity and responsibility in their lives, though of course she is a great joy to us all.

Very healthy 71 year old, took no meds, active as a 25 yr. old, had stress test due to age, just routine, used Lexiscan injection, this was on Thursday May 11th, by Tuesday May 16th I could hardly walk, turn my head, pain in every joint. Unreal pain, at the top with pain of shingles, went to my primary care physician, didn’t have a clue but gave me steroids…..bottom line as long as steroids are in my system, I’m o.k. As soon as they are out of my system, can hardly walk. All boxes check with PMR, to see rheumatologist in one week. So my stressor was the lexiscan dilator for a heart stress test which was 100% normal. NEVER HEARD OF PMR but it has my attention now

68 here and I had never heard of it either til I ended up in the ER, barely able to walk and in agony just turning over in bed. Now I've begun tapering off the steroids. The first attempt was too soon and I knew because of pain. This tim it is so far, so good from 15 to 12.5 per day. I'll fo slower this next drop.
Good luck. There is a lot of helpful info here re PMR.

Hello @misery3, I would like to add my welcome to Connect along with @vellen and others. You will notice that we moved your post to an existing discussion here so that you can read what others have shared and join the conversation with other questions you may have.

--- Polymyalgia Rheumatica (PMR): Meet others & Share Your Story: https://connect.mayoclinic.org/discussion/polymyalgia-rheumatica-pmr-meet-others-share-your-story/.

Like you it gained my full attention when my first bout with PMR came on. My rheumatologist recommended that I keep a daily log with my level of pain in the morning along with my dose of prednisone for the day. This helped when I was struggling to taper off of prednisone. You might also be interested in the following related discussion:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

Do you mind sharing what dosage of prednisone the doctor started you on and if you have a plan to taper off?

Good Morning Misery3, So glad you found this support group. It is filled with wonderful people who “get it”. Like you, many of us in this group had never heard of PMR, but upon diagnosis have become well versed in auto immune disorders. When talking with friends and family it’s very difficult to get across the intensity of the pain and how debilitating it can be. WE here all understand. It’s is great that you will see a rheumatologist soon. I am two months into my diagnosis and have begun to taper off prednisone (very slowly). While life is normal now (without pain), I seem to be always waiting for the other shoe to drop. Any ache I get and my mind starts racing. Like you I had no other health conditions but that doesn’t matter to PMR. FYI, I have pretty much adopted the Mediterranean Diet sans salt and sugar. No processed food, white flour, simple carbohydrates. I’m not sure if it has helped, but eating healthier can’t be bad.? Please keep us posted on your progress. We are all in your court. Patience and good luck. Liz Ward

I was diagnosed with PMR 2 years ago when I could hardly walk and was immediately put on steroids. By August 2022 I was down to 1 mg but my husband then became
terminally ill and I cared for him in a hospital bed in the house with the help of carers until he died on February 3rd. As you can imagine I was filled with grief and Polymyalgia came back with a vengeance. My doctor then increased my steroids. I am now down to 3mg and feeling so much better. I have no aches and pains and drink a lot of water which is recommended for pmr. I walk every day and do yoga. I am 79 and honestly feel I am now on the road to recovery. Please do not despair and I hope that like me you will feel a lot better. Take care

Hi, Richard.....I, too wake up with no pain, no fatigue or stiffness and lots of energy. However, in early afternoon, all of that changes and I experience extreme stiffness in both legs to the point of having difficulty walking. And sometimes, the stiffness along with a feeling of pins and needles extends to my arms. Usually that lasts for a few hours and the stiffness dissapates. Although I had typical PMR symptoms in the beginning starting this past April, I had and still have no inflammatory markers. My rheumy tried methyprednisolone and it worked immediately, and I was on a dosage of only 6 mg. However, the afternoon pain & stiffness returned and I am now on 8 mg. of "regular" prednisone which, I understand, is not quite as strong as the methyprednisolone. Does anyone else have similar symptoms?

New to this site….four months of pain in the the buttocks area and right arm in the morning. Thought it was because my chiro moved out of state. Tried new chiropractors, PT. Acupuncture. And still had trouble the mornings the worst. Spoke to a friend who suggested PMR and on March 3rd began with 10 mg of prednisone from the rhumatologist. Pain went way and so did my hair!! Now we are in July, Tried to taper off but left arm is difficult to raise and hard for steering the car. Went back to doctor and now on 7.5 in the am and 7.5 in the pm. Arm still bad and think it might be injured (rotator cuff)?? Guess we all think it is other than the PMR. Now this morning my left groin area is painful and difficult to walk the dog, of course, working through it. This new discomfort is annoying. My hair looks like I have had chemo. Too sad. Never heard of thi PMR. Read articles loosely associating it with the vaccine (CVID). Thoughts?? Nancy

Hello @gerryandnancydupont, Welcome to Connect. What you are describing doesn't sound like the typical onset of PMR. I've had 2 occurrences both were treated with 20 mg prednisone to start which got rid of all of the pain within hours of taking the first dose. Then it was a struggle to begin the tapering process to get off of prednisone once the PMR pain was under control. I think I would start keeping a daily log of the pain level and locations along with any other symptoms so that you can discuss them when you see your doctor or rheumatologist.

There are quite a few conditions that have similar symptoms to PMR. Here's some information on the topic.
--- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica.

The starting dose for most people for PMR is 12.5 to 25 mg or higher. I think based on weight. 10 mg sounds like it's a little low for PMR but then I'm not a doctor. Here is some information you might find helpful.
--- GCA & PMR - Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica: https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429

You might want to have a discussion with your rheumatologist again. Mine told me I have to listen to my body when I start to taper off of prednisone and to do it slowly. Are you able to have a discussion with your rheumatologist or doctor about your symptoms after the treatment was started?