PMR Dosages and Managing Symptoms

Posted by maryft @maryft, Aug 16, 2021

I've read through the discussions and note all the different dosages of prednisone, different lengths of time taking prednisone, plus the addition of other meds, for PMR. I also note that the tapering of dosages and time frames are so varied from person to person. It appears there is not a set standard among physicians. How does one know if they were/are receiving the right dosage? Obviously, if symptoms subside, the dose is working, but after tapering if the symptoms return, was the initial dosage correct? I've also read that a person shouldn't be on prednisone long term, but there are many who've been on it for a few years. Its all very confusing.

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

It is all very confusing as you say. I have been on prednisone 21 months. I started at 15 mg, reduced.by 2.5 mg every 3 months until I hit 5 mg. I have been reduced 1 mg every two months from there, and am told I should.be off prednisone by the end of January 2023, absent flare ups. My rheumatologist believes in slow and steady and is completely driven by what my bloodwork reveals, regardless of my pain experience. Good chemistries = prednisone reduction for me. Point finale. No arguing. She is driven to get me off prednisone.

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Getting off Prednisone is always the goal. But, sometimes the doctor has to listen to the patient rather than the lab results.( or lack of)

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@tillysam

Getting off Prednisone is always the goal. But, sometimes the doctor has to listen to the patient rather than the lab results.( or lack of)

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I am with you but she is steadfast and the wait for a new rheumatologist is a year and a half.

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@tillysam

Getting off Prednisone is always the goal. But, sometimes the doctor has to listen to the patient rather than the lab results.( or lack of)

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I agree! So many doctors and rheumys say that you will be over PMR in 2 years. A more recent study by Mayo showed the average was over 6 years! Some need to update their thinking and not just go by lab results. The only thing predictable about PMR is its unpredictability.

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@raven1955

I agree! So many doctors and rheumys say that you will be over PMR in 2 years. A more recent study by Mayo showed the average was over 6 years! Some need to update their thinking and not just go by lab results. The only thing predictable about PMR is its unpredictability.

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6 years! That is very interesting and good to know. I feel this great pressure to be "cured" at the 2 year mark. Thank you.

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Diagnosed with PMR and was prescribed prednisone-40mg daily/month to 20mg to 15 mg to 10 mg to 5mg. But the prednisone weakened my Achilles tendon and tendons in my knees that I had difficulty with stability & walking. PMR was in submission but I had to stop medication because of sore legs; PMR came back. Restarted taking 10 mg of prednisone again and tendons weaken again fairly quickly. Anyone had similar issues? Is there an alternative to prednisone?

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@dallas

Diagnosed with PMR and was prescribed prednisone-40mg daily/month to 20mg to 15 mg to 10 mg to 5mg. But the prednisone weakened my Achilles tendon and tendons in my knees that I had difficulty with stability & walking. PMR was in submission but I had to stop medication because of sore legs; PMR came back. Restarted taking 10 mg of prednisone again and tendons weaken again fairly quickly. Anyone had similar issues? Is there an alternative to prednisone?

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Hello @dallas, Welcome to Connect. I've had two occurrences of PMR but have not noticed weakened tendons in my knees. My PMR is currently in remission but when it was active I did have trouble with stability and walking due to the pain which went away while on prednisone.

You will notice that we moved your post into the following existing discussion on the same topic so that you can meet other members like @mary4, @raven1955, @tillysam, @naezzo, @kmeikle1, @tsc and others. If you click the link it will take you to the first post in the discussion where you can read through the experiences of other members.

-- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/

How long ago were you diagnosed with PMR and started on 40mg of prednisone?

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I have seen some fasinating research on Low Dose Naltrexone with regards to autoimmune disease and I think it should be tried for PMR if a person can't take prednisone. It seems to do some of the same things that pred does without the side effects. Talk to your Rheumy about it and research it on line and YouTube.

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I would like to see some discussion on the relationship between PMR and inflammatory arthritis. My rheumatologist has me on hydroxychloroquine and prednisone. I am down to 8.5 mgs of prednisone. Since the onset of PMR, my hands have burned, been sore and it kept getting worse. That was when the rheumatologist put me on the hydroxychloroquine, feeling it will help me to taper the prednisone and also reduce the swelling and soreness in my hands. It seems to have done that, but I continue to have some swelling and soreness in my hands. They are much better, and I can use them to do most things. My rheumatologist thinks I will need to continue be on a medication for the arthritis if and when the PMR is resolved. I would love to hear if others have this kind of experience. My PMR pain is resolved with the current dose of both meds, but the hand issue is my major problem. Does PMR trigger arthritis?

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@sharonanng

I would like to see some discussion on the relationship between PMR and inflammatory arthritis. My rheumatologist has me on hydroxychloroquine and prednisone. I am down to 8.5 mgs of prednisone. Since the onset of PMR, my hands have burned, been sore and it kept getting worse. That was when the rheumatologist put me on the hydroxychloroquine, feeling it will help me to taper the prednisone and also reduce the swelling and soreness in my hands. It seems to have done that, but I continue to have some swelling and soreness in my hands. They are much better, and I can use them to do most things. My rheumatologist thinks I will need to continue be on a medication for the arthritis if and when the PMR is resolved. I would love to hear if others have this kind of experience. My PMR pain is resolved with the current dose of both meds, but the hand issue is my major problem. Does PMR trigger arthritis?

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@sharonanng, What a great question. I think it definitely has a relationship with arthritis but I'm certainly no expert and have no medical training. Here's some info kind of relating to the junior partner relationship.

"Polymyalgia rheumatica (PMR) is an auto-inflammatory rheumatic disease of people over 50 years, presenting with pain and stiffness in the neck, shoulder and hip girdles. The term PMR was first used to underline that it seemed substantially milder from rheumatoid arthritis (RA) as no joint damage had been observed."
-- Diagnosis of polymyalgia rheumatica usually means a favourable outcome for your patient:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5644293/

My PMR is in remission right now but my hands are generally sore at different times of the day, probably all day but I only notice it when I'm not thinking about it. I also have carpal tunnel which is another reason for the soreness.

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