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

@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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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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Thanks for all comments in last 2 days. I am currently on bout 3 of PMR, down to 7 mg and really taking my time. The first time I had PMR (16 years ago), my then rheumatologist told me I was at high risk for tendonititis and to avoid heavy weights. That time, I did get tendinitis twice and they were both one-sided. Treated one with acupuncture, one with PT. They were secondary to PMR. He also told me to do as much range of motion as I could, so I do. I have a tendency to want to try to get off prednisone too fast. The first time I had PMR, it took me two years to get off prednisone and I didn’t have a relapse for about 10+ years. The second time, I got off in 10 months, but the PMR recurred 8 months later. I plan to decrease now by 1/2 mg a month or even less. I have seen some of the UK sites as well. Sometimes, I use a small dose of ibuprofen or Tylenol when I am decreasing and have some pain. The first time I had it, I was working for an endocrinologist and I asked him about the difficulty I was have decreasing the dose. He said it may be because after a period of time, you have to wait for your body to begin producing it’s own cortisol. It is a strange disease. I have moved and have a new young rheumatologist. She admits she doesn’t have all the answers and i like that she listens to me. The first time I had PMR, the pressures went up in my eyes and I became a glaucoma risk. They went down after I was off prednisone, I have an eye appt. in 2 weeks, so will see if that is a problem again. Hang in there everyone.

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@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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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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@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.

Jump to this post

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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