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

Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.

Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Saw the rheumatologist yesterday. CRP is very low, sed rate still elevated. Going to increase methotrexate from 10 to 15 mg 1X weekly and decrease Prednisone from 12.5 to 10 mg daily. She would like to increase methotrexate to 20 mg but I have some kidney impairment and she doesn't want to put more stress on them. She said, long term, it would be better to be on methotrexate than on prednisone.

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@jaco

I have only just been diagnosed with PMR and wondering if any one has had acupuncture instead of steroids?

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Jaco....
Great question.
I have often wondered that too.

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Some symptoms came back this month after tapering from 7.5 to 5 mg. Doctor put me back up to 7.5 for this next month and then tapering down to 6.5 or 6 mg. Sure wish the Prednisone wasn't needed to control the pain and swelling but so be it. I am fortunate to have a PCP who has had a lot of patients with this disease and who respects my opinions.

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Just a brief update. After increasing methotrexate by 5 mg daily (1x per week), I had significant body aches and fatigue, somewhat better this a.m. From what I've read, this is not an unusual reaction to the drug and it often goes away with continuing use.

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I’m 83 and was diagnosed two months ago. The methylprednisolone I was prescribed worked very quickly and I was feeling great. Now I have terrible pain in my Achilles tendon, and it’s not getting any better. I’m beginning to think it’s another symptom of PMR. Has this ever happened to anyone ?

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@reets70

I’m 83 and was diagnosed two months ago. The methylprednisolone I was prescribed worked very quickly and I was feeling great. Now I have terrible pain in my Achilles tendon, and it’s not getting any better. I’m beginning to think it’s another symptom of PMR. Has this ever happened to anyone ?

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Achilles tendonitis can be a part of generalized inflammatory arthritis.

https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/achilles-tendonitis

I have both inflammatory arthritis and PMR. It doesn't have to be one or the other. Sometimes it is a combination of things. My rheumatolgist blamed all of my pain on systemic inflammation due to a variety of things. She actually said I had a "full range" of rheumatology problems.

I use to play sports but that was a long time ago. I don't think that was the reason for my Achilles pain but might have contributed some wear and tear on my achilles.

I don't think PMR was the main reason for it either. Prednisone weakens tendons and sometimes causes them to rupture. I have tears on my achilles tendon but it hasn't ruptured yet. However, another tendon did rupture while I was on high dose prednisone.

The "spontaneous" tendon rupture happened at work so there was a debate if it was "work related" or caused by prednisone. Nobody claimed it was due to PMR but the exact cause was a mystery. There was no evidence to conclude anything except that my tendon ruptured spontaneously! It takes quite a bit of effort to rupture a tendon.

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I have not been officially diagnosed with PMR - still waiting to see an Rheumatologist- in my area appointments are 1.5 years out - I was able to get an appointment the end of this June in a town about 260 miles away.

Im a 50 year old male, started having shoulder pain in February, then maybe a week later both my legs had thigh pain - was at the point of having trouble getting into bed, dressing and getting into my vehicle- went to see my Dr. I don’t think he fully understood the amount of pain or stiffness I was describing and showing him - he did do blood work and my SED rate was 69 - he gave me prednisone 40mg a day for a week - pain wasn’t as bad and I was semi functional- after the week he would not refill my script- within 48 hours I was in full pain and stiffness mode - went back to my Dr. he put me on prednisone again for a week and 75mg of Duloxetine as he thought it was fibromyalgia- after one week I was not given prednisone and continued the Duloxetine with no relief - then I ended up getting real sick the beginning of April - went to a walk in clinic - and gave me prednisone for my “flu” which actually was Covid I found out by doing a home test.

After that prednisone was over my symptoms started to come back 8 hours of stopping prednisone- by the next day I was barely able to get out of bed, needed assistance in the restroom and could not dress myself.

Called my Dr. back and was able to see him that day - after seeing me in that condition he started me on 40 mg of prednisone for 2 weeks and put me on methotrexate 2.5 a week, going up every week until 7.5.

Was feeling really good by week 2, and again he stopped the prednisone- it take 3 days this time before I was fully back in pain and the pain was now in my elbows and neck was extremely stiff on right side.

I was able to get him to give me prednisone but this time he only gave me 20mg a day and continue with the methotrexate

I did start doing PT to help get range of motion back - still in pain with limited motion but not nearly as bad without the prednisone.

Seems like the only thing that takes away my pain and stiffness is 40mg of prednisone - hoping to get some answers in June when I see the Rheumatologist.

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Hello...
Was diagnosed with PMR May 2022. Have had trouble tapering of Prednisone at 6 and 5mg several times.
And I am still having trouble tampering from 6 to 5. I decided to decrease dosage by 1/2 mg; so I just started on 5 1/2 mg. Currently no pain. If anyone has tried reducing dosage by 1/2 mg....how long did you stay on it???
Last blood test for SED rate was 7 and 30 days before it was 6. Still in range.
Last blood test for C-Reactive Protein was 2.6 and 30 days before it was 1.4; significant increase.
Wondering if your Rheumatologist/PCP has recommended Hydroxychloroquine (Plaquenil) at 200mg to be taken daily? Any thoughts on this????
If so, doctors reasonings??, how did you feel, side effects, and did your CRP number decrease?
Why is my SED rate number in range but I can't get my CRP blood test to be in range.
Has your Rheumatologist and or PCP mentioned increase of CRP number due to stress?
How is much does stress play a role in increased CRP?
Has anyone found that heavy gardening or exercise can increase PMR pain?

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@cah

Hello...
Was diagnosed with PMR May 2022. Have had trouble tapering of Prednisone at 6 and 5mg several times.
And I am still having trouble tampering from 6 to 5. I decided to decrease dosage by 1/2 mg; so I just started on 5 1/2 mg. Currently no pain. If anyone has tried reducing dosage by 1/2 mg....how long did you stay on it???
Last blood test for SED rate was 7 and 30 days before it was 6. Still in range.
Last blood test for C-Reactive Protein was 2.6 and 30 days before it was 1.4; significant increase.
Wondering if your Rheumatologist/PCP has recommended Hydroxychloroquine (Plaquenil) at 200mg to be taken daily? Any thoughts on this????
If so, doctors reasonings??, how did you feel, side effects, and did your CRP number decrease?
Why is my SED rate number in range but I can't get my CRP blood test to be in range.
Has your Rheumatologist and or PCP mentioned increase of CRP number due to stress?
How is much does stress play a role in increased CRP?
Has anyone found that heavy gardening or exercise can increase PMR pain?

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I thought I still had PMR after I had tapered down to 1 mg of prednisone. I went to my rheumatologist fully expecting to be put back on prednisone because I was still stiff and sore. My inflammation markers were lower so he said I was done and should expect to have stiffness off and on for a while longer. It’s been a few months and I have good days and bad days. But I’m off prednisone and am happy with that. I hope to be totally stiffness free soon. (. He said to take it easy - your adrenals could take up to a year to get back to normal)

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@deejayc

I thought I still had PMR after I had tapered down to 1 mg of prednisone. I went to my rheumatologist fully expecting to be put back on prednisone because I was still stiff and sore. My inflammation markers were lower so he said I was done and should expect to have stiffness off and on for a while longer. It’s been a few months and I have good days and bad days. But I’m off prednisone and am happy with that. I hope to be totally stiffness free soon. (. He said to take it easy - your adrenals could take up to a year to get back to normal)

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Congratulation!
Happy for you.
Can’t wait for the day I am off prednisone!

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