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.

@johnbishop

Hi Mary @mary4, You are doing great! If you have been OK with .5 for a month, you have been tapering slowly and stopping prednisone at .5 is a good test to see if you are still OK with the little to no pain when you wake up the next morning. I did that for six months my first time around with PMR bouncing between 1 and .5 until I could finally stop taking prednisone with little to no pain. It had lasted about 3 and half years by the time I was off prednsione the first time.

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Just to clarify John, you took .5 for 6 months daily before your dead stop? Or, did you do a dead stop and then restarted the .5 because you had pain? Many thanks.

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@mary4

Just to clarify John, you took .5 for 6 months daily before your dead stop? Or, did you do a dead stop and then restarted the .5 because you had pain? Many thanks.

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I tried stopping the .5 dose three or four times during the six month period. A couple of times I went back up to 1 mg due to my pain level. I was trying to stop the taper on a weekly basis. I kept a daily log of dose and level of pain. If my pain was above a 2 when I woke up in the morning and started moving around I didn't try to taper that week.

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@johnbishop

I tried stopping the .5 dose three or four times during the six month period. A couple of times I went back up to 1 mg due to my pain level. I was trying to stop the taper on a weekly basis. I kept a daily log of dose and level of pain. If my pain was above a 2 when I woke up in the morning and started moving around I didn't try to taper that week.

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Thank you John.

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@mnmom1

I do exercise and that is helping me to keep my wt, BP and blood sugar down along with watching my carbs intake. This whole thing is the pits. I can’t believe you have been through this more than once. My biggest thing is I’m tired. I don’t sleep very well at night due to the prednisone, I think . Sleep 4 hours then I’m ready to go. Get up and read, then I get 3/4 more hours of sleep. I dislike being on prednisone…..

Thanks for the post.

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I, too, sleep 4 hours and end up doing a wash, cleaning something up, watching tv, reading a book, etc. My day is interminably long. Usually in the afternoon I have to get in a horizontal position and just relax for an hour or so. Crazy routine thanks to Prednisone.

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@milld835

Unsure. My dose is 20mg which alleviates almost all the pain. Just diagnosed 2 weeks ago. Still a little stiffness in upper arms...but otherwise good.

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One year later...how are you doing?

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Today was a set back but I was encouraged by all your experiences. Found out my Bone Scan wasn’t good. I now find I have to up my Prednisolone dose to 3 MG and take bone meds. I get the impression that neither the medical industry or my doctors know very much about this condition. I have found it hard to get consistent information on diet, are tomatoes good for your our bad, that depends on who is writing. And if they are then why not sweet pepper or potatoes? And Chocolate? Good or bad?

Today, I feel like I am going backwards when I thought I was making progress. Although it’s a little selfish, it is somehow good to read your experiences and not to feel so alone. I haven’t been using exercise to help but now I will. Thank you for all your positive posts. Has anyone any experience with bone density meds. I don’t want to start taking something that makes PMR worse.

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I have a question and not sure where to put it. It is about type of pain. I founf I had two types. Pain when I wasn't using my muscles and pain when my muscles were under a load. Low Dose Naltrexone helped the non moving pain but not the one under a load. This pred addressed (when I finally got diagnosed.) Now my upper body is fine but my thigh muscles are painful- and stiff- under a load. Had EMG which was normal, so not nerves. PMR that only effects lower half of body? New disease? Any ideas?

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@suetex

I have a question and not sure where to put it. It is about type of pain. I founf I had two types. Pain when I wasn't using my muscles and pain when my muscles were under a load. Low Dose Naltrexone helped the non moving pain but not the one under a load. This pred addressed (when I finally got diagnosed.) Now my upper body is fine but my thigh muscles are painful- and stiff- under a load. Had EMG which was normal, so not nerves. PMR that only effects lower half of body? New disease? Any ideas?

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Hi Sue, There are a list of conditions that mimic PMR. Anything sound similar symptom wise?

-- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

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@johnbishop

Hi Sue, There are a list of conditions that mimic PMR. Anything sound similar symptom wise?

-- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

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Thank you, John. I have looked at this list before and can't say any of them sounds like a better fit. I am interested in the ANAs of others on this site, just for comparison. I have never had a positive RF. My Lupus test has always vacilated between the positive cut-off and negative. What has been high was my single strand DNA. It started out 9 times the high value and none of the Drs. have a clue what it means. It has gone down over the course of pred treatment, but still over high cut-off. I would like others to share what their's are. I have never had a fever, loss of appitite, joint envolvement, trouble sleeping, (after non-moving pain resolved.) Pred "fixed" me at 20mg at 2 days when I first tried it. This thigh muscle pain fits PMR but no pain in upper half. So what could it be?

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@suetex

Thank you, John. I have looked at this list before and can't say any of them sounds like a better fit. I am interested in the ANAs of others on this site, just for comparison. I have never had a positive RF. My Lupus test has always vacilated between the positive cut-off and negative. What has been high was my single strand DNA. It started out 9 times the high value and none of the Drs. have a clue what it means. It has gone down over the course of pred treatment, but still over high cut-off. I would like others to share what their's are. I have never had a fever, loss of appitite, joint envolvement, trouble sleeping, (after non-moving pain resolved.) Pred "fixed" me at 20mg at 2 days when I first tried it. This thigh muscle pain fits PMR but no pain in upper half. So what could it be?

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Have you seen this discussion?
-- Positive ANA: What might be the cause?
https://connect.mayoclinic.org/discussion/positive-ana/

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