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) Support Group.

@lorip67

Can you send me info how the Leto and other things you have done ? Thanks Lori

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W.R.T. Keto diet: Well there’s the obvious weight loss (to me). Recent blood work results: pre diabetic to an A1C of 4.5, blood glucose 90 from near 150 at times, have been diagnosis with NAFLD - both blood tests in the green, all other blood test are in there green. Have had trouble getting a full nights sleep…now with a CBN gummy at night I’m getting more restful sleep (cause and effect? I don’t know)…I use MFP to record and track carbs, fats and sugars (and calories). I’m anxiously awaiting (hoping that is) for improvements in my “background symptoms” I.e., various levels of pain and stiffness that are annoying but mostly tolerable, and the ability to continue tapering off of Prednisone not too mention continued weight loss…BTW I follow a Dr.Ken BerryMD on YouTube for perspective on a multitude of health oriented issues..

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@lorip67

Can you send me info how the Leto and other things you have done ? Thanks Lori

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Welcome Lori @lorip67, I'm happy to see that you have connected with @novabill who has had some great results from Keto and other experiences. I'm also a big believe in the benefits of a Keto type diet and intermittent fasting. There is another discussion that you might want to check out since you are doing intermittent fasting.

— Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

Have you been diagnosed with PMR?

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My doctor had me decreasing prednisone by 1 mg every 2 weeks. Then when my symptoms started to return, he suggested an additional tapering step. For instance, after 2 weeks at 4 mg, then taking 4 mg one day, 3 the next, 4 the next and so on for 2 weeks. That seemed to work pretty well until I got down to about 2 mg. I am now alternating 1 and 1.5 mg. Hope this helps.

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@novabill

W.R.T. Keto diet: Well there’s the obvious weight loss (to me). Recent blood work results: pre diabetic to an A1C of 4.5, blood glucose 90 from near 150 at times, have been diagnosis with NAFLD - both blood tests in the green, all other blood test are in there green. Have had trouble getting a full nights sleep…now with a CBN gummy at night I’m getting more restful sleep (cause and effect? I don’t know)…I use MFP to record and track carbs, fats and sugars (and calories). I’m anxiously awaiting (hoping that is) for improvements in my “background symptoms” I.e., various levels of pain and stiffness that are annoying but mostly tolerable, and the ability to continue tapering off of Prednisone not too mention continued weight loss…BTW I follow a Dr.Ken BerryMD on YouTube for perspective on a multitude of health oriented issues..

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What is w.r.t keto

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@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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