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

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

@lorip67

What is w.r.t keto

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with regard to KETO

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@novabill

with regard to KETO

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Lol ok thanks

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To Barbara- I saw the comment about a vibration plate. While tapering from 6 down to 4 of prednisone slowly, I added a massage machine that does vibrate. And I sleep much better when I use it prior to bed. Shoulders, neck, quads…. I was surprised about that. Pain is what keeps me up at night, and nights have been much better with this routine. I do yoga stretches as well, as muscle tightness is as a problem overall. I hope this helps. Judy

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This blog is very helpful. What I am struggling with right now is the tapering with prednisone. My doctor is not giving me a lot of advice. I was started on 20 mg and went down 5 mg every two weeks until I got to 10 mg. After that I went down 1 mg per month . I started to have a lot of pain when I went down to 6 mg. She upped me to 8 mg and I’ve been taking that for four or five days and it’s not made a difference. Now she’s suggesting that I go up to 10 mg if I want. I’m thinking of doing that. She had me go down 1 mg per month and after reading some of these things I’m thinking I could go down 1 mg maybe every couple of weeks? Any input will be appreciated. Thank you

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@sandy1988

This blog is very helpful. What I am struggling with right now is the tapering with prednisone. My doctor is not giving me a lot of advice. I was started on 20 mg and went down 5 mg every two weeks until I got to 10 mg. After that I went down 1 mg per month . I started to have a lot of pain when I went down to 6 mg. She upped me to 8 mg and I’ve been taking that for four or five days and it’s not made a difference. Now she’s suggesting that I go up to 10 mg if I want. I’m thinking of doing that. She had me go down 1 mg per month and after reading some of these things I’m thinking I could go down 1 mg maybe every couple of weeks? Any input will be appreciated. Thank you

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Hi @sandy1988, Welcome to Connect. Tapering off of prednisone can be difficult for a lot of us. My first time with PMR I was also started on 20 mg dose and it immediately got rid of the pain. It then took me 3 and half years to taper off with going back and forth between 1 mg and 1/2 mg dose until I was able to stop taking prednisone. What helped me the most was some advice and suggestions by my rheumatologist. He told me to keep a daily pain and dosage log while I was tapering with the pain scale between 1 and 10. Then only taper down if the pain was tolerable. For me that was either a 1 level or 2 level of pain/ache when I got up in the morning. It always seem to get better as the day went on and I moved around. If I woke up after tapering down and my pain was above 2, then I would increase the dose by half of what I went down the day before to see if that made a difference. Basically it was learning how to listen to my body and how I felt and adjust the prednisone to get me through the day.

My PMR went into remission for six years and then came out again and I started on 20 mg again. This time tapering was much easier for me and I was able to taper off in a year and half. I did make some lifestyle changes which I think really made a different – more exercise (not the intense stuff!), eating healthier and less inflammatory food, eliminating as much sugar as possible, etc..

Have you tried to make any lifestyle or diet related changes to see if that would help?

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@johnbishop

Hi @sandy1988, Welcome to Connect. Tapering off of prednisone can be difficult for a lot of us. My first time with PMR I was also started on 20 mg dose and it immediately got rid of the pain. It then took me 3 and half years to taper off with going back and forth between 1 mg and 1/2 mg dose until I was able to stop taking prednisone. What helped me the most was some advice and suggestions by my rheumatologist. He told me to keep a daily pain and dosage log while I was tapering with the pain scale between 1 and 10. Then only taper down if the pain was tolerable. For me that was either a 1 level or 2 level of pain/ache when I got up in the morning. It always seem to get better as the day went on and I moved around. If I woke up after tapering down and my pain was above 2, then I would increase the dose by half of what I went down the day before to see if that made a difference. Basically it was learning how to listen to my body and how I felt and adjust the prednisone to get me through the day.

My PMR went into remission for six years and then came out again and I started on 20 mg again. This time tapering was much easier for me and I was able to taper off in a year and half. I did make some lifestyle changes which I think really made a different – more exercise (not the intense stuff!), eating healthier and less inflammatory food, eliminating as much sugar as possible, etc..

Have you tried to make any lifestyle or diet related changes to see if that would help?

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Thank you so much! I Keep up with a good exercise routine but I hear you about the sugar. For me it’s not the sugar but probably the carbs…

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@sandy1988

This blog is very helpful. What I am struggling with right now is the tapering with prednisone. My doctor is not giving me a lot of advice. I was started on 20 mg and went down 5 mg every two weeks until I got to 10 mg. After that I went down 1 mg per month . I started to have a lot of pain when I went down to 6 mg. She upped me to 8 mg and I’ve been taking that for four or five days and it’s not made a difference. Now she’s suggesting that I go up to 10 mg if I want. I’m thinking of doing that. She had me go down 1 mg per month and after reading some of these things I’m thinking I could go down 1 mg maybe every couple of weeks? Any input will be appreciated. Thank you

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I'm going through a similar problem with the taper. I went from 20 mg down to 10 with no pain at all. At 8 mg I had some pain but wasn't sure if it was PMR or pre-existing back and neck pain. I continued the taper on down to 6 mg at 1 mg drop every 3 weeks. Then the pain got worse and radiated outward into my shoulders. I called my doctor and he told me to go back up to 9 where I had been pain-free. That only partially helped so he told me to bump up to 10. Pain relief is fairly good there. I've learned to take my symptoms seriously and that trying to endure pain does not help in the process of getting off prednisone. I've done research online about the taper. American College of Rheumatology (2015) recommends 1 mg drop per month of prednisone below 10 mg. My rheumatologist says 1 mg every 3 weeks from 10 mg to 5 mg and then a slower taper, but he didn't give details about that. At this point 5 mg seems a long way off!

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@linda7

I'm going through a similar problem with the taper. I went from 20 mg down to 10 with no pain at all. At 8 mg I had some pain but wasn't sure if it was PMR or pre-existing back and neck pain. I continued the taper on down to 6 mg at 1 mg drop every 3 weeks. Then the pain got worse and radiated outward into my shoulders. I called my doctor and he told me to go back up to 9 where I had been pain-free. That only partially helped so he told me to bump up to 10. Pain relief is fairly good there. I've learned to take my symptoms seriously and that trying to endure pain does not help in the process of getting off prednisone. I've done research online about the taper. American College of Rheumatology (2015) recommends 1 mg drop per month of prednisone below 10 mg. My rheumatologist says 1 mg every 3 weeks from 10 mg to 5 mg and then a slower taper, but he didn't give details about that. At this point 5 mg seems a long way off!

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I have to cut the tabs in half and taper and the closer I get to 3mg I quarter decreasing by 3-4 days and I do much better. Had a set back and now have to start from 5 again. But should go quickly back to 3 then the slow process.

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@sandy1988

This blog is very helpful. What I am struggling with right now is the tapering with prednisone. My doctor is not giving me a lot of advice. I was started on 20 mg and went down 5 mg every two weeks until I got to 10 mg. After that I went down 1 mg per month . I started to have a lot of pain when I went down to 6 mg. She upped me to 8 mg and I’ve been taking that for four or five days and it’s not made a difference. Now she’s suggesting that I go up to 10 mg if I want. I’m thinking of doing that. She had me go down 1 mg per month and after reading some of these things I’m thinking I could go down 1 mg maybe every couple of weeks? Any input will be appreciated. Thank you

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Forgot to mention in my last note about the half and quartered tabs, that I could not do without my TENS unit for back that bothers me the most with pain and stiffness.

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@sandy1988

This blog is very helpful. What I am struggling with right now is the tapering with prednisone. My doctor is not giving me a lot of advice. I was started on 20 mg and went down 5 mg every two weeks until I got to 10 mg. After that I went down 1 mg per month . I started to have a lot of pain when I went down to 6 mg. She upped me to 8 mg and I’ve been taking that for four or five days and it’s not made a difference. Now she’s suggesting that I go up to 10 mg if I want. I’m thinking of doing that. She had me go down 1 mg per month and after reading some of these things I’m thinking I could go down 1 mg maybe every couple of weeks? Any input will be appreciated. Thank you

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Tapering off can be challenging. I am fortunate I have a Doctor who works with me, his philosophy is I know my body better than he does. So we dovetail his medical knowledge and my sense of what my body needs to do next. I hope that makes sense because I know it seems a bit loopy. So what we have come up with, which is working at the moment is, if the pain is not in the areas that I normally experience PMR then stay with the dose I am on and support with Tylenol. If that works and I am then pain-free continue that for a while. Then I’ll do the alternating days like 4 mg 3 mg 4 mg for one month or less. I realize that this protocol might be not acceptable by other medics but am fortunate to have a doctor that supports this philosophy.

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@sashakay

Tapering off can be challenging. I am fortunate I have a Doctor who works with me, his philosophy is I know my body better than he does. So we dovetail his medical knowledge and my sense of what my body needs to do next. I hope that makes sense because I know it seems a bit loopy. So what we have come up with, which is working at the moment is, if the pain is not in the areas that I normally experience PMR then stay with the dose I am on and support with Tylenol. If that works and I am then pain-free continue that for a while. Then I’ll do the alternating days like 4 mg 3 mg 4 mg for one month or less. I realize that this protocol might be not acceptable by other medics but am fortunate to have a doctor that supports this philosophy.

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I’m really having problems ramping down. My labs are good but a lilt pain in 1-2 places persists. I’ve been hovering around 16-17mg for a month. Saw my doc yesterday who stressed ramping down. I was wondering about taking Tylenol for the pain portion of the process as long as labs are good. I’ve started trying the every other day dose too. Thank you…so helpful to be on this blog.

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