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

My GERD resolved about a week after I started making and drinking kefir. No problems since then. Kefir is full of probiotic bacteria and yeasts that have kept my gut in shape for years.

When I was in my 60s I went to my PCP and described my symptoms. I thought he was going to say it was all in my head! Instead, he said "I know just what you have." He ordered the test so he could start me on prednisone but the test came back negative -- not even close to the borderline. He sent me to a rheumatologist who agreed it was probably PMR, and had another test done. Same result, so he gave me prednisone to see if that made it go away. I took a 30 day pack. By the second day, I felt fine. Finished the pack and went on my way. Now, about 15 years later, it is back but one 30-day dose did not make it go away. So now I am working on managing it with a very low dose of prednisone (2mg), hot showers, careful diet, extra strength Tylenol, and Biofreeze until I can see my doctor, which is finally almost here --7 days. The low, low dose of prednisone is something I asked for; I want to minimize how much I have to take. 2mg is not enough --that's pretty clear to me-- but I have learned so much from this group that I am feeling optimistic that I will be able to work out a routine that minimizes the prednisone and keeps me comfortable. Fingers crossed.

Thank you so much.

Hi Joan7, sorry to hear that you are having issues with GERD. I have that issue too. My rheumatologist informed me that prednisone actually causes GERD so it may not be the PMR but the treatment. I liked the kefir recommendation and I am going to give that a try, hope it works for both of us! ❤️

Prednisone has also made my diabetes worse. Before Presiosne it was controllable through diet. Trying to find answers. Thanks for mentioning thar in your post.

I had onset of symptoms in July of last year at 58 yrs old. It took four months for a diagnosis, with CRP the clincher at >52. Sed rate was normal. In hindsight, I should have noticed my resting HR was up significantly…heart is a muscle and gets inflamed with PMR.

I was put on 20 mg of prednisone and within two days felt like a new person. Tapered until about July, down to 4mg/day. I started to have hand swelling and pain starting at 7 mg/day but no other issues so continued to taper as wanted to get off prednisone. In July, I had a situation of loss of peripheral vision in one eye and numbness in neck. Concern was for GCA. I was ramped up to 20 mg/day of prednisone until GCA was ruled out. At 20 mg, my hand issues resolved. Although neck numbness did not. Other side effects of prednisone experienced have been weight gain, insomnia and increase in BP.

I tapered off prednisone by mid August (too quickly?) and hand pain and swelling is back. Bilateral pain in shoulders too so starting prednisone at 5mg/ day and working with my doctor on dosage. Numbness in neck came back immediately with taking prednisone.

While believe I need to treat PMR, I really want to understand what triggers it and/or makes symptoms worse. I’ve gone gluten free and noticed that has helped. Alcohol also is a trigger. Taking tumeric, but not sure of benefit.

Have continued to watched my resting heart rate and now focussing on heart rate variability (HRV). My HRV seems to be inversely correlated to degree of pain/flare. Not a leading indicator, but tends to change prior to changes in CRP. Taking note of everything I eat, sleep, exercise, etc. I’ve also explored family history and genetics. Of Northern European descent and grandmother had rheumatoid arthritis.

Work it progress.

Hi Everyone,
Seven weeks in and I'm only working with a PA until I can get in the the Rheumatologist - 2 more days. I diagnosed myself and she agreed after the blood test was positive and with the amount of prednisone I wanted to take - 15 mg, which I take all at once in the morning at about 5:30 AM with food.

I wait a bit, maybe an hour and start on everything else - tylenol, lion's mane mushroom alcohol extract, turkey tail mushroom extract (I forage for my own mushrooms), two cubes of turmeric (I put fresh turmeric that I grow myself or buy at Publix into a blender and add enough water to make a slurry and put in ice cube trays).

I am usually fit enough to play Pickle Ball by 9:30. If I didn't live for Pickle Ball I really think I would curl up in a ball. Some days are much worse than others, today being one. I have been a vegetarian for over 30 years and rarely eat processed foods. I tried not drinking alcohol but found no difference.

Before the prednisone I could not put down the dogs' food bowl without moaning. I live alone so there is no one to hear. I had the first covid shot and the booster when they came out but no others. I was just fine living my life as a potter (I can still pot) and playing Pickle Ball when I got sciatica and after a week whoa this happened out of the blue. Sciatica disappeared the day this started. Shoulders and hips. I am in so much pain in the mornings I can't imagine tapering down from the prednisone.

That's all, just wanted to say hey and I read all you all write here. Oh my age - I'm just now 64.

A couple of comments:

1- Interesting about the sciatica. I had off and on "mild" leg/back pain since early 2022 and it resurfaced around April this year. It progressively was getting worse, with pain/stiffness in my hip flexors (which is not typical), so went to my ortho/spine clinic. Everything was OK with spine, but the inflammation markers were very high. Went to my PCP and worked out it was PMR and confirmed when I finally met my rheumatologist. Anyway, now that my pain is under control with prednisone for the past two months, my right leg sciatica is back for the past two weeks. I started doing yoga stretches about a week ago and it is really starting to improve!

2- Prednisone taper - I was started at 20mg (10/morn and 10/eve) and it worked wonders and was immediate. Was at that dose for 5-6 weeks. After meeting with rheumatologist, did my first taper to 17.5 and she insisted I take all at once. Well, after a couple of days the pain and stiffness became too much, so I went back to my 10/10 for a couple of days and knocked it out. I then tried 10/7.5 split for two weeks and that worked very well, with just some mild shoulder/wrist discomfort. I'm now 5 days into my 10/5 step down and so far things have stayed the same for shoulder/wrists. Reading a lot of posts here, it makes a lot of sense to taper no more than 10% at a time and wait at least two weeks before the next taper. As important, listen to your body as we are all different.

I'm 63 and just wanted to let you know how someone your age and also a few months into this "thing", is seeing some light at the end of the tunnel and feeling more positive.

Wishing you the best!

Diagnosed with PMR /GCA in February started out with 40 mg of prednisone now down to 10 mg. I have no symptoms at all, and actually feel great being pain-free. Six weeks ago I had my blood test. My CRP was 1.2. ( highest should be O.9) and SED rate 28 .(highest should be 20.)
So dr said, let’s wait six weeks and take the test again. Today was six weeks I had my test and my CRP came down to 0.7. !! 😆 But SED rate went to 29 !! Bummer !!! I have an appointment with the doctor on Friday and have no idea where we go from here.
Anybody have any thoughts on why the CRP came down but not the SED rate .. thanks for any input

I have not heard of that before. So far, my CRP and Sed Rate have both moved in the same direction. But I was initially diagnosed in May, so maybe this is something I may see later. Good luck with your treatment!