How to address PMR pain while decreasing prednisone

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can’t take pain meds, but do drink wine to ease pain, although I’m told no alcohol w prednisone. Anything you can share as far as info

@heretaunga1947

You are definitely not alone. I must admit I was complacent and happy to live in relative comfort at first with about 10 mg but then the Covid and with the affect of the prednisone on the immune system, and at same time finding out I had shot up into the pre diabetic state made me make a big effort and like you say, just keeping on working through now. Our local pool is opening up again so I am going back as I found aqua jogging is very good in getting those thigh muscles working, doing things I can't normally do. Hope things start to go better for you.

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Thank you, Keep up the good work.

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@sallygosse

It is such a comfort to hear everyones stories. It is what truly makes me feel not alone in this. Not many people really understand what we go through, and how the pain affects our emotional well being . I started 20 mg prednisone 2 years ago . It has been an up and down battle to get as low as 4mg. Then the pain came back full force. I went up to 10mg for 4 days to try and reset. Im now at 7mg because I was in too much pain going back to 4. A person has to be so strategic! There are no rules to follow, so you have to listen to your body and try to adjust medications to bring yourself to a good quality of life. I still have pain, in my shoulders and hips, but use Tylonal when it is bad. Good luck everyone! our experiences with PMR can be so different from eachother, that the more stories we read, the more often we find one that is just like our own, and it is comforting.

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@sallygosse
Hi everyone, I am a bit late into this discussion but thought I would add my story as it may help someone. It took me nearly two years to get off prednisone and my tapering was back and forth a bit but patience is the name of the game with this and like most of you I just wanted to get off prednisone as soon as posssible due to the side affects. My original dosage was 20mg which I stayed on for 2 months, then dropped to 15mg for 2 months and then down to 10mg. Once I got to 10mg I dropped 1mg per month, at first I had more aching but put up with it for a least a week to see if it would settle and it normally did to a point where I could cope with it, I kept up reducing the 1mg per month still testing if the pain would reduce after a week, if it didnt I would go back up 1mg and then try again. This worked until I got to the 1mg, this was the hardest to get off and I felt quite bad with not the PMR but I think the affects of coming off the prednisone. After a while I realised I could not just drop the 1mg, so I reduced like this, 1mg for two weeks, 1mg every four days for a two weeks,1mg every 3 days for two weeks and so on until I reduced it down to 1mg once a week, then I tried just stopping and it worked. I still have stiffness but I treat that with a CBD balm and CBD oil drops if it is too bad. This works for me and life is better not being on the prednisone. I realise that not all people are the same but this is my story and I hope it helps someone. Good luck to all that are trying to get off this drug. Love and light to you all.

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@lindapc

@sallygosse
Hi everyone, I am a bit late into this discussion but thought I would add my story as it may help someone. It took me nearly two years to get off prednisone and my tapering was back and forth a bit but patience is the name of the game with this and like most of you I just wanted to get off prednisone as soon as posssible due to the side affects. My original dosage was 20mg which I stayed on for 2 months, then dropped to 15mg for 2 months and then down to 10mg. Once I got to 10mg I dropped 1mg per month, at first I had more aching but put up with it for a least a week to see if it would settle and it normally did to a point where I could cope with it, I kept up reducing the 1mg per month still testing if the pain would reduce after a week, if it didnt I would go back up 1mg and then try again. This worked until I got to the 1mg, this was the hardest to get off and I felt quite bad with not the PMR but I think the affects of coming off the prednisone. After a while I realised I could not just drop the 1mg, so I reduced like this, 1mg for two weeks, 1mg every four days for a two weeks,1mg every 3 days for two weeks and so on until I reduced it down to 1mg once a week, then I tried just stopping and it worked. I still have stiffness but I treat that with a CBD balm and CBD oil drops if it is too bad. This works for me and life is better not being on the prednisone. I realise that not all people are the same but this is my story and I hope it helps someone. Good luck to all that are trying to get off this drug. Love and light to you all.

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I did as you did and once i went back to 5 and after 18 to 20 I was off. Prednisone is nasty stuff but it worked

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@kmeikle1

Re. Rule 3…I am currently tapering and had to increase from 7 to 10 mgs. due to increased discomfort (below waist and above knees) and especially pain in my thighs, but honestly it's primarily in my left thigh. I don't believe it can be anything other than my PMR (such as a strain), but I'm concerned now based on your comment about it being bilateral. Comments?

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As to bilateral pain, I do think it is almost always bilateral. But NOT always. Certainly one can get pain worse on one side or the other, but usually there is some pain bilaterally. It is hard to differentiate at times from overuse injuries as all of us struggle to do what we can and sometimes overdo it. While on Pred, injuries take longer to heal, so it’s hard to know if it is caused by PMR or is something else indirectly related to work stress or exercise.
About tapering, everyone is different but more people report success with a very slow taper, thereby avoiding flares. When we start, we don’t know our threshold so tapering can go rather quickly. In other words, if you are newly diagnosed, your doctor may prescribe 20mg a day to start, even though you really could get by on 7 (which of course you and your doctor can’t know). So you do well, cut to 15, and do well, etc., down to 7. When you cut from 7 to 6, you may flare, so you have to go back to 7 and slow the taper. (Actually many people do have a problem tapering when in the range of 6-8 mg because that is the level of cortisol normally produced by functioning adrenal glands. They “shut down” when you take more Pred, and hopefully “awake” when you start dipping below 7 mg).
John is right that many of us can be dependent upon Pred for years, or even for life. Everyone is different and we can only speak in terms of generalities.

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@lindapc

@sallygosse
Hi everyone, I am a bit late into this discussion but thought I would add my story as it may help someone. It took me nearly two years to get off prednisone and my tapering was back and forth a bit but patience is the name of the game with this and like most of you I just wanted to get off prednisone as soon as posssible due to the side affects. My original dosage was 20mg which I stayed on for 2 months, then dropped to 15mg for 2 months and then down to 10mg. Once I got to 10mg I dropped 1mg per month, at first I had more aching but put up with it for a least a week to see if it would settle and it normally did to a point where I could cope with it, I kept up reducing the 1mg per month still testing if the pain would reduce after a week, if it didnt I would go back up 1mg and then try again. This worked until I got to the 1mg, this was the hardest to get off and I felt quite bad with not the PMR but I think the affects of coming off the prednisone. After a while I realised I could not just drop the 1mg, so I reduced like this, 1mg for two weeks, 1mg every four days for a two weeks,1mg every 3 days for two weeks and so on until I reduced it down to 1mg once a week, then I tried just stopping and it worked. I still have stiffness but I treat that with a CBD balm and CBD oil drops if it is too bad. This works for me and life is better not being on the prednisone. I realise that not all people are the same but this is my story and I hope it helps someone. Good luck to all that are trying to get off this drug. Love and light to you all.

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That's a clever idea for reducing.

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@pfafpa

As to bilateral pain, I do think it is almost always bilateral. But NOT always. Certainly one can get pain worse on one side or the other, but usually there is some pain bilaterally. It is hard to differentiate at times from overuse injuries as all of us struggle to do what we can and sometimes overdo it. While on Pred, injuries take longer to heal, so it’s hard to know if it is caused by PMR or is something else indirectly related to work stress or exercise.
About tapering, everyone is different but more people report success with a very slow taper, thereby avoiding flares. When we start, we don’t know our threshold so tapering can go rather quickly. In other words, if you are newly diagnosed, your doctor may prescribe 20mg a day to start, even though you really could get by on 7 (which of course you and your doctor can’t know). So you do well, cut to 15, and do well, etc., down to 7. When you cut from 7 to 6, you may flare, so you have to go back to 7 and slow the taper. (Actually many people do have a problem tapering when in the range of 6-8 mg because that is the level of cortisol normally produced by functioning adrenal glands. They “shut down” when you take more Pred, and hopefully “awake” when you start dipping below 7 mg).
John is right that many of us can be dependent upon Pred for years, or even for life. Everyone is different and we can only speak in terms of generalities.

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Thank you. You provided information I was not aware of (re. 6-8 mg being "the level of cofrtisol normally produced by functioning adrenal glands.") That will help manage my expectations and I travel back down that road.

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@kmeikle1

I'm discouraged because it took a lot for me to get from 15 mgs to 7 mgs and now I went back up to 10. So you just kept working through to get lower on prednisone even with pain and discomfort? Thanks for sharing…it helps to know I'm not alone.

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Kmeikle1, in reading this message chain one can see the vagaries of PMR. It is certainly possible to have tendinitis or muscle pain on one side, but that is usually caused by overuse. In fact, many people have such symptoms as it seems to be easier to injure tendons and muscles while on higher dosages of Prednisone and it takes longer to recover. Such pain in an indirect result of PMR however. Classic PMR pain is almost always bilateral although it doesn’t have to be equal. In other words, if one thigh hurts to 8/10, usually the other also hurts, but can be 1/10 or any other number. No pain on the other side would be rare for PMR, but remember everyone is different and there are exceptions for every rule. You do NOT want to try to work through PMR pain. Usually that makes things worse. Prednisone use is not fun, but it beats PMR pain, so you should take the smallest dose that controls the pain. Tapering is really individualized and it can take years (some people are on it for life). Some doctors keep patients on a low dose permanently to avoid flares, so they don’t yo-yo. We have a tendency to rush the taper too much sometimes, and the very slow taper seems to provide more long term success to patients.

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@pfafpa

Kmeikle1, in reading this message chain one can see the vagaries of PMR. It is certainly possible to have tendinitis or muscle pain on one side, but that is usually caused by overuse. In fact, many people have such symptoms as it seems to be easier to injure tendons and muscles while on higher dosages of Prednisone and it takes longer to recover. Such pain in an indirect result of PMR however. Classic PMR pain is almost always bilateral although it doesn’t have to be equal. In other words, if one thigh hurts to 8/10, usually the other also hurts, but can be 1/10 or any other number. No pain on the other side would be rare for PMR, but remember everyone is different and there are exceptions for every rule. You do NOT want to try to work through PMR pain. Usually that makes things worse. Prednisone use is not fun, but it beats PMR pain, so you should take the smallest dose that controls the pain. Tapering is really individualized and it can take years (some people are on it for life). Some doctors keep patients on a low dose permanently to avoid flares, so they don’t yo-yo. We have a tendency to rush the taper too much sometimes, and the very slow taper seems to provide more long term success to patients.

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Thank you for taking time to respond. I'm doing some testing with my cardiologist and working with my rheumotologist as well. Best guess at this point is that it is not my PMR. I'm headed down again very slowly with the prednisone.

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@barbararene

It seems like almost all of my intense pain has moved to my feet. It is especially on the sides of my feet and some on the bottoms of my feet. Still have pain in shoulders and arms, but it’s like it has moved to my feet more. I am on 4 mg of predisone. I sure hate to increase the dose but don’t know about this. Any thoughts?

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I am on 4mg also and have been experiencing pain on my outer foot also. Didn’t know if it was a symptom also thanks for sharing

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@txluvbug2003

I am on 4mg also and have been experiencing pain on my outer foot also. Didn’t know if it was a symptom also thanks for sharing

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Hello @txluvbug2003, Welcome to Connect. According to the National Organization for Rare Disorders, the lower arms, hands, lower legs, and feet (distal extremities) are not usually affected by this disorder.

Polymyalgia Rheumatica: https://rarediseases.org/rare-diseases/polymyalgia-rheumatica/

When I was first diagnosed with PMR, I was having pain and swelling in my right foot along with pain in my arms and shoulders. When I finally went to the doctor, I found out I had gout in my right foot and a few weeks later the rheumatologist diagnosed me with PMR and put me on prednisone. I've had another occurrence of PMR since the first one but it's now in remission and I'm hoping it stays there.

When were you first diagnosed with PMR?

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@kmeikle1

I'm discouraged because it took a lot for me to get from 15 mgs to 7 mgs and now I went back up to 10. So you just kept working through to get lower on prednisone even with pain and discomfort? Thanks for sharing…it helps to know I'm not alone.

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It has been quite some time since I have back to the group My initial diagnosis was a self diagnosis because I could not get in to see my GP A second DR did not ask the right questions but gave me Tylenol with codeine for the extreme pain I was having I have several severe issues , including serious degenerative disc disease, serious muscle and joint pain from Letrozole as a follow up to breast cancer as well as two hip replacement from osteoarthritis So when I started having very severe pain in my shoulders, muscles and down my arm I knew something had changed I am an OLD pharmacist and still read a lot of medical research papers
So when I looked at the PMR , I realized I checked every box and particularly my Scandinavian heritage on both sides of my family I managed to get a C Reactive Protein Blood test and it showed high rate of inflammation My GP saw it and immediately agreed with my self diagnosis and started me on 30 mg per day
I finally got in the see my rheumatologist, who wanted me to taper at 5mg per day until I got to 20 then 2.5 until 10 I had discovered a split dose worked best for me , but even then at 10 I had a flare My rheumatologist wanted me to go back to 13 for a month of and then to 9 That did not work , so I put myself at 15 and that helps lot So I have now tried a new method of tapering which so far is working very well Still using a split dose, I developed a schedule which I read about on the British National health site similar to this site

I took the initial 15 (10-5) for 5 days , then 9 and 5 one day , back to 10-5 , then down to 9 and 5 for 3 days, then then , 9 and 4 for 1 day , back to 9,and 5 for 2 days etc
I am now at 7 and 5 and will repeat going back and forth slowly until it I get to 9
It is working very well each time The National Health site says that this method appears to work best for some people When I get to 9 , I will stay at my higher dose days A little longer , before reducing EacH time you get closer to 7 you stay 4 or 5 days longer than you do above 10
It is strange to me that we all experience PMR so differently but it is important to remember My rheumatologist tells me it important that you do not try to tough it out The goal is to take the least amount that allows your pain to be controlled I also read that some a Rheumatologists are now leaving patients on up to 2 mg per day for life to help reduce the risk of recurrence if the PMR

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I wonder if the doctor thinks the risk/benefit analysis comes down on the side of the side effects, particularly osteoporosis. I have a large frame, have been told my Dexa exam showed "the bones of a young adult" I am 81. If I go below 10 mg. I become symptomatic. After three times during the last year trying to wean off, I was clearly being maintained on an insufficient dose to be useful. Exercising is not possible when quadricep muscles simply will not work and are painful, as is the pelvic girdle. Deltoids refuse to help getting out of a chair. I still have PMR, and I cannot manage daily living below 10mg/day. I think there are cases where a more prolonged use of steroid is mandatory. On 5 mg, I have trouble getting out of bed, and I sit in a chair all day because moving is so painful and the weakness makes me unstable. I lose muscle strength from inactivity. And yes, I am a pianist, and cannot sit at the piano and play when symptomatic.

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@mompiano

I wonder if the doctor thinks the risk/benefit analysis comes down on the side of the side effects, particularly osteoporosis. I have a large frame, have been told my Dexa exam showed "the bones of a young adult" I am 81. If I go below 10 mg. I become symptomatic. After three times during the last year trying to wean off, I was clearly being maintained on an insufficient dose to be useful. Exercising is not possible when quadricep muscles simply will not work and are painful, as is the pelvic girdle. Deltoids refuse to help getting out of a chair. I still have PMR, and I cannot manage daily living below 10mg/day. I think there are cases where a more prolonged use of steroid is mandatory. On 5 mg, I have trouble getting out of bed, and I sit in a chair all day because moving is so painful and the weakness makes me unstable. I lose muscle strength from inactivity. And yes, I am a pianist, and cannot sit at the piano and play when symptomatic.

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Hello @mompiano, Welcome to Mayo Clinic Connect. PMR can definitely keep a person from doing pretty much anything when the disease is active and you are in pain. It took me 3-1/2 years to taper off of prednisone for my first occurrence of PMR and 1-1/2 years the second time. My rheumatologist did tell me that a small percentage of people are not able to taper completely off and do keep taking a smaller dosage. You mentioned you have been trying to wean off of prednisone this past year. When were you diagnosed with PMR and started on prednisone?

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@johnbishop

Hello @mompiano, Welcome to Mayo Clinic Connect. PMR can definitely keep a person from doing pretty much anything when the disease is active and you are in pain. It took me 3-1/2 years to taper off of prednisone for my first occurrence of PMR and 1-1/2 years the second time. My rheumatologist did tell me that a small percentage of people are not able to taper completely off and do keep taking a smaller dosage. You mentioned you have been trying to wean off of prednisone this past year. When were you diagnosed with PMR and started on prednisone?

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Diagnosed with PMR in May 2020 after suffering for several months with occasional courses of prednisone. Had 13 blood tests to diagnose the cause for everything from Lyme's to lupus to Dengue Fever. Finally sent to a rheumatologist who concluded it was PMR.

I was started on 10MG of prednisone in May which has been slowly reduced to 6MG presently and ultimately 5 MG in mid October. At about the 7 MG dosage, I started feeling some pain, but not distracting. However, I am Type II diabetic and also have hypertension. Both my Blood glucose and blood pressure had gone out of control and after adjusting those medications, it seems BP and BG are now normal after some scary symptoms.

I joined this discussion group after reading this can be a long term condition. I was expecting maybe one year of treatment and then PMR would go away, but the stories shared indicate it can last years and return. I am 72 and led a very active lifestyle. Since PMR, I have to force myself to get things done.

Are there any alternatives to prednisone that work without the side effects? I have read that CBD oil helps, but cannot find any research that backs up the claims. I live in Colorado where CBD oil and cannabis are legal, but am skeptical about effectiveness. I p!an to discuss with my rheumatologist and wanted some feedback before that happens in November.

I wish you all the very best, Bob

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@bob48

Diagnosed with PMR in May 2020 after suffering for several months with occasional courses of prednisone. Had 13 blood tests to diagnose the cause for everything from Lyme's to lupus to Dengue Fever. Finally sent to a rheumatologist who concluded it was PMR.

I was started on 10MG of prednisone in May which has been slowly reduced to 6MG presently and ultimately 5 MG in mid October. At about the 7 MG dosage, I started feeling some pain, but not distracting. However, I am Type II diabetic and also have hypertension. Both my Blood glucose and blood pressure had gone out of control and after adjusting those medications, it seems BP and BG are now normal after some scary symptoms.

I joined this discussion group after reading this can be a long term condition. I was expecting maybe one year of treatment and then PMR would go away, but the stories shared indicate it can last years and return. I am 72 and led a very active lifestyle. Since PMR, I have to force myself to get things done.

Are there any alternatives to prednisone that work without the side effects? I have read that CBD oil helps, but cannot find any research that backs up the claims. I live in Colorado where CBD oil and cannabis are legal, but am skeptical about effectiveness. I p!an to discuss with my rheumatologist and wanted some feedback before that happens in November.

I wish you all the very best, Bob

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Hello @bob48, Welcome to Mayo Clinic Connect. I've had 2 occurrences of PMR and it is currently in remission. I have no medical background or training but I am pretty sure that the prednisone controls the cause of the muscle and joint pain which is inflammation. What has helped me more than anything is staying active as much as possible while not overdoing it and changing my eating habits. I also take a few supplements which I believe help keep the PMR in check as I don't think you ever get rid of it, it just goes into remission.

You might find the following articles helpful:

– Diet and Supplements for Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/diet-and-supplements-polymyalgia-rheumatica-pmr
– Polymyalgia rheumatica diet: Foods to eat and avoid: https://www.medicalnewstoday.com/articles/321683
– 3 Strategies for Coping with Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

I have no experience with CBD oil or medical cannabis since I was able to taper off of prednisone and my PMR went into remission. @artscaping may have some information to share with you on it's use for relieving pain. Here's a study I found that has some information that might help you.

– Medical Cannabis Use by Rheumatology Patients Following Recreational Legalization: A Prospective Observational Study of 1000 Patients in Canada: https://onlinelibrary.wiley.com/doi/full/10.1002/acr2.11138

After you meet with your rheumatologist and make a decision can you come back and give use an update?

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