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

thanks so much for your input..i was beginning to think i was crazy..got the covid vaccine yesterday and the only new sensation is nausea

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@bunkysmum78

I did not know the meaning of fatigue until I got PMR. Not sure if fatigue=
is caused by the PMR or the prednisone or a combination of both.

Sent from Mail for Windows 10

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Yes, I agree. Severe fatigue even doing little things but try to push through it. Wish I knew if it was the PMR or the Prednisone, but I am only on 4 mgs. at present but cant seem to get below that before pain starts again.

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@erikas

@glendal I'm sorry to hear about stiffness and lack of mobility days. Have you noticed if anything helps improve your bad days? Like a heating pad, a nap, the food you eat. the outside temperature, etc.?

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Yes to all of the above ie. exercise, heating pad, even TENS machine helps. When I am up to it. i fear the winter weather inhibits me. My mobility is poor due to the stiffness and I have fallen twice that put me back to months, and now fear has crept in.

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@smugs59

I experience the awful stiffness – no pain or lack of sleep. Some days are worse than others but it’s always there. I just have to pace myself with small activities. I do find ibuprofen helps sometimes.

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Interesting, like you no pain or lack of sleep or weight gain but I wondered if the prednisone, contributes to stiffness? I don't take well to many meds including ibuprofen, Tylenol3. I seem to have some sort of a reaction. Maybe, as has been suggested here, we are overmedicated and the body just can't take it???

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@johnbishop

Hi Barbara Rene’ (@barbararene) – Think happy thoughts about PMR going into remission. My first occurance was in 2007 and it took my several years to get off of prednisone which was in July 2010. It went into remission and didn’t rear it’s ugly head until last August. So, I’m hoping it doesn’t take me 3 years to get off prednisone and that it goes into remission forever. I’ve been focusing on eating a more healthy diet and have incorporated the nasty green smoothie for breakfast 4 to 5 times a week. I do know that diet and nutrition play a significant part in autoimmune illnesses. I started on my path after finding and reading The Wahls Protocol book by Dr. Terry Wahls. She has an amazing story of how she was able to significantly improve the symptoms of her MS – http://terrywahls.com/about/about-terry-wahls/. I thought it was just another diet book until I read a little more about her.

Here’s hoping for happy thoughts that your PMR will go into remission very soon!

John

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Hi John,
I too started the Wahl diet about 2 months ago.
Do you think it has helped you in any way?
After 3 weeks I noticed the constant soreness in my shoulders went away and the minor pain in my knees too disappeared. Now 2 months into it I'm disappointed to say my neck and knee pains are back.
I'm going to give it another month and probably stick with part of the diet and reintroduce some of the foods. It's really a strict diet!!
Thanks for any advice,
Carol

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@dubuquer

Hi John,
I too started the Wahl diet about 2 months ago.
Do you think it has helped you in any way?
After 3 weeks I noticed the constant soreness in my shoulders went away and the minor pain in my knees too disappeared. Now 2 months into it I'm disappointed to say my neck and knee pains are back.
I'm going to give it another month and probably stick with part of the diet and reintroduce some of the foods. It's really a strict diet!!
Thanks for any advice,
Carol

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Hi Carol @dubuquer, I see that you've been a member for awhile but this is your first post so I would like to welcome you to Connect. The Wahl's diet can be pretty strict depending on which version you do. It's been awhile since I first read the book and got interested in eating more healthy to support my immune system. At first I was following the basic diet in her book and do think it helped my overall health. I wasn't taking it for PMR at the time because that was in remission. I started it because I thought it could have an impact on slowing the progression of my small fiber peripheral neuropathy which it didn't really have an impact on. I have eliminated processed foods and try to eliminate or limit the amount of sugar I consume.

You didn't mention but I'm assuming your pain is due to polymyalgia rheumatica (PMR). Are you still tapering off of prednisone?

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Yes, I am on 4 mg. All and all I feel good – a lot better than most of those that post! I get these little niggles and I worry that I'll have to increase again.
This also is my second go around. I believe I was in such a hurry to get off Pred the first time that I ignored the signs.
Anyway, my Dr. suggested Metrodextrate to help me reduce if I keep having problems. I don't want to go that route!
Thanks for getting back to me so quickly.

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Flush Face and Ears that itch

Was diagnosed with PMR in August 2020…Started on 20 mg of Prednisone been reducing…Am now on 6 mg…The last week have been developing red cheeks and ears that really itch bad…Any help with what is going on and is there a solution to condition ??</p>

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@reeveshouse

Flush Face and Ears that itch

Was diagnosed with PMR in August 2020…Started on 20 mg of Prednisone been reducing…Am now on 6 mg…The last week have been developing red cheeks and ears that really itch bad…Any help with what is going on and is there a solution to condition ??</p>

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@reeveshouse Welcome to Mayo Clinic Connect, a place to give and get support.

August is a recent diagnosis and I'm assuming this is all new to you.

You will notice that I added your question to a previous discussion. I did this so you could connect with members like @dubuquer @munchie @bunkysmum78 @glendal @smugs59 @roberta125 @kimh @karinaph @dmsbronch in a central location.

If you haven't already done so, you may wish to scroll through the past posts to look for members that have experienced something similar.

May I ask if you have had a chance to explore other related discussions in this group? There are many that you will likely find helpful.

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@johnbishop

Hello @barbararene, welcome to Mayo Connect. I also have PMR. The first time I was diagnosed with PMR was put on 20 mg of prednisone. It took me well over a year to titrate off of prednisone going back and forth between 1 mg to 1/2 mg before I was finally able to get off of it. My PMR has been in remission until this past August and I was put back on 20 mg of prednisone. My doctor put me on a 21 week titration schedule to get off of it and I’m now on week 23 and going back and forth between 10 and 7.5 mg of prednisone. I have been as low as 5 mg but the pain was bothersome. I have a doctors appointment next week and am planning to discuss a different titration schedule. I think the first time it was trying to reduce the dosage every 3 days instead of every week. I can deal with a little pain but didn’t want it to get out of hand. I don’t use any alcohol as it has negative effects on my small fiber peripheral neuropathy.

Are you able to split the 5 mg pills to go from 10 to 7.5 mg? I think that’s how I was finally able to get off the first go round with my PMR.

Hoping your PMR goes into remission so that you can stop taking the prednisone.

John

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Once you get to 10 mgs, reducing by 1/2 mg is recommended. Never reduce more than 10%. You want to reduce to the amount that takes care of the PMR inflammation but no lower, otherwise the inflammation keeps growing until you have a flare. If the PMR is gradually going into remission, you then have to make sure the adrenals are working before going any lower. The adrenals create cortisol, the equivalent of 6 or 7 mgs prednisone. Your body stops making cortisol when you are on pred for a long time. It takes a year or longer for adrenals to begin making cortisol again. Some adrenals do not recover and prednisone takes over. The slower you reduce, the greater chance for the adrenals to awaken.

I was on 6/7 mgs pred for almost two years. I am in my fifth year of PMR and am on 3 1.2 mgs. I would be lower except for an arthritic hip for which I am awaiting hip replacement. I use the following method (Dorset Lady's) to reduce: Sun-new dose other days old dose; Sun/Th new dose, other days old;SunTuTh new dose, other days old; SunTUWTHU new dose, others old; SunTUWThSat new, MF old; the following week all new dose. It is easy to stop if the new dose shows signs of a flare and prevents seesawing up and down..
.

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@peggyp

Once you get to 10 mgs, reducing by 1/2 mg is recommended. Never reduce more than 10%. You want to reduce to the amount that takes care of the PMR inflammation but no lower, otherwise the inflammation keeps growing until you have a flare. If the PMR is gradually going into remission, you then have to make sure the adrenals are working before going any lower. The adrenals create cortisol, the equivalent of 6 or 7 mgs prednisone. Your body stops making cortisol when you are on pred for a long time. It takes a year or longer for adrenals to begin making cortisol again. Some adrenals do not recover and prednisone takes over. The slower you reduce, the greater chance for the adrenals to awaken.

I was on 6/7 mgs pred for almost two years. I am in my fifth year of PMR and am on 3 1.2 mgs. I would be lower except for an arthritic hip for which I am awaiting hip replacement. I use the following method (Dorset Lady's) to reduce: Sun-new dose other days old dose; Sun/Th new dose, other days old;SunTuTh new dose, other days old; SunTUWTHU new dose, others old; SunTUWThSat new, MF old; the following week all new dose. It is easy to stop if the new dose shows signs of a flare and prevents seesawing up and down..
.

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I have a question and a concern. I have PMR and have reduced (1 mg a month) now at 1.5. I certainly don't feel pain and discomfort like I did when I started on prednisone, but the last 2 weeks or so I have experienced slight discomfort in my neck, hips and thighs. It is certainly manageble and doesn't keep me from going about my daily exercise or sleeping. However, I read about others going up and down on prednisone to manage the pain and reduce the inflammation. Should I expect the discomfort to go away completely before quitting prednisone or do you taper to a level that is tolerable? My worry is that inflammation is still "brewing" and I may get GCA.

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@irishdancer

I have a question and a concern. I have PMR and have reduced (1 mg a month) now at 1.5. I certainly don't feel pain and discomfort like I did when I started on prednisone, but the last 2 weeks or so I have experienced slight discomfort in my neck, hips and thighs. It is certainly manageble and doesn't keep me from going about my daily exercise or sleeping. However, I read about others going up and down on prednisone to manage the pain and reduce the inflammation. Should I expect the discomfort to go away completely before quitting prednisone or do you taper to a level that is tolerable? My worry is that inflammation is still "brewing" and I may get GCA.

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I have been wondering about that very issue. It seems like we need some research into this question. I know that getting off prednisone quicker and tolerating some discomfort seemed to lead me right into a relapse, where staying between 1/2-1 mg of prednisone for almost a year led to being free of PMR for 12 years. I see mention of waiting for your body to again produce cortisone. I wonder if this process is slower when you’re older. You’re right! GCA is the fear!

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