Polymyalgia rheumatica

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

@johnbishop

Hi @rearea1, you are ahead of the game so to speak. I wasn't very informed during my first occurrence of PMR did not know about steroid induced osteoporosis or I think I could have done some things to help reduce the chances including more weight bearing exercises, calcium and vitamin D supplements, and watching the weight gain. It also makes it worse if you smoke or drink but I've never smoked and didn't use alcohol much then.

Osteoporosis and long-term prednisone: What is the risk?
https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/expert-answers/osteoporosis-prednisone/faq-20057843

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John..

In reply to @rearea1 "My PMR began in the summer of 2017 as I was under…" + (show)
A little update and question: as I mentioned above, I did faint & fall back in August. I hurt my back and had it treated by chiropractor and massage therapist. My inflammation levels went way down when working with a healer.
Now my mid back muscles (between waist and shoulder blades) and extending around to sides and ribs, are tight as a drum and go into spasms. Getting in and out of bed is difficult..as is the simple act of turning over in bed. I’ve been cutting back gradually from 7 mg Prednisone and now are on 4. Could the reduction in medication be the cause of this new muscle pain? Has anyone else experienced this?

Liked by Dee

@rearea1

A little update and question: as I mentioned above, I did faint & fall back in August. I hurt my back and had it treated by chiropractor and massage therapist. My inflammation levels went way down when working with a healer.
Now my mid back muscles (between waist and shoulder blades) and extending around to sides and ribs, are tight as a drum and go into spasms. Getting in and out of bed is difficult..as is the simple act of turning over in bed. I’ve been cutting back gradually from 7 mg Prednisone and now are on 4. Could the reduction in medication be the cause of this new muscle pain? Has anyone else experienced this?

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@rearea1 – I have experienced more pain when I tried to taper off of prednisone too fast. I had my best results when I was under 10 mg dosage by going down 1 mg per week. Even then when I got to 1 mg and tried to go off I had to go back and forth a few weeks between 1 mg and 1/2 mg until I was finally able to stop. I never experienced spasms though but did have joint pain and a lot of stiffness. Making sure I did some kind of mild exercise seemed to help me. I just couldn't over do it.

Liked by Dee

@rearea1

Barb, I feel your pain. It’s not a pleasant journey. I just want to again mention that you’ll want to alter your entire diet to eliminate foods that cause inflammation. Even something such as a starch food..when digested, starch turns to sugar..and sugar is the first food to get rid of. One night I ate 1/2 sweet potato and the next morning I could not move. It’s that fast and that important.
Here is the anti-inflammation drink. In a blender put:
1/2 C coconut water
1 1/2 C fresh pineapple
1/2 inch freshly grated ginger
Handful of spinach
1tsp ground Termic
Dash (or less for me) cayenne pepper
1/2 ice cubes
Blend…..

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Thanks very much for recipe…now, just have to buy a blender!

@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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I am a primary care physician and have had PMR for 3 years. Prednisone is the only medication that works for me. I have burst and tapered several times due to flares and am currently at 7.5 mg per day. I am seeing a rheumatologist and have also taken methotrexate and sulfamethoxazole with no relief. I am aware of the potential side affects with long term pred use, but it has become a quality of life issue for me. I am always tapering and got as low as 1.5mg before I relapsed. This is a slow process toward recovery and I’m hopeful I can wean off completely some day. Daily exercise, especially stretching and moist heat offers some relief. Morning stiffness and pain is the worst. For those of you who also suffer from this, don’t despair.

@mooty

I am a primary care physician and have had PMR for 3 years. Prednisone is the only medication that works for me. I have burst and tapered several times due to flares and am currently at 7.5 mg per day. I am seeing a rheumatologist and have also taken methotrexate and sulfamethoxazole with no relief. I am aware of the potential side affects with long term pred use, but it has become a quality of life issue for me. I am always tapering and got as low as 1.5mg before I relapsed. This is a slow process toward recovery and I’m hopeful I can wean off completely some day. Daily exercise, especially stretching and moist heat offers some relief. Morning stiffness and pain is the worst. For those of you who also suffer from this, don’t despair.

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Hello Mooty my name is Beryl….I have had PMR for nine years now and have been to the point of taking two Mgs of preds. I went through a time, as you all seem to do, of tapering down but never have I been without pain especially at night were I take a Norco pill , if I didn't I wouldn't sleep…..
Midway through all this I was put on 60mg again as I was.suspected to have GCA. The biopsy wasn't positive …….now I have been taking 3mg. of preds. for eighteen months and have been told not to lower it ……I seem to be getting slightly better as the months go on but it is a very slow process and I don't seem to be slipping back …..I too hope very much one day to see the back of this thing and I am not the sort of person to despair luckily ……
I am fortunate enough to be in Sicily for three months getting away from the rain and cold at home in Oregon …..I somehow made the journey which was a tortuous at times but it was worth it and funnily enough although my muscles were swollen ,not my legs themselves, and it didn't put up my pain ratio as in previous years,…..I am looking at that as a very positive sign …..Beryl

I was diagnosed with PMR ih my hips about 2 years ago. After the diagnosis, I was on decreasing dosages of Prednisone for over a year, but the pain always came back. My rheumatologist suggested that I try Plaquenil to avoid the affects of being on Prednisone for the long term Do any of you have experience with this drug? I am on 200 MG right now, but still have some hip pain – but not all the time. Don't want to increase dosage as this med can be bad for your eyes. I'm trying to figure out why the pain comes and goes – like does it have anything to do with drinking alcohol, foods with high fat content, etc? BTW, I have gotten amazing pain relief from high quality CBD lotion, which I put on my hips if the pain wakes me in the night.

@awag

I was diagnosed with PMR ih my hips about 2 years ago. After the diagnosis, I was on decreasing dosages of Prednisone for over a year, but the pain always came back. My rheumatologist suggested that I try Plaquenil to avoid the affects of being on Prednisone for the long term Do any of you have experience with this drug? I am on 200 MG right now, but still have some hip pain – but not all the time. Don't want to increase dosage as this med can be bad for your eyes. I'm trying to figure out why the pain comes and goes – like does it have anything to do with drinking alcohol, foods with high fat content, etc? BTW, I have gotten amazing pain relief from high quality CBD lotion, which I put on my hips if the pain wakes me in the night.

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Unfortunately, I had an allergic reaction to plaquenil when I tried it years ago. My feet and hands peeled terribly. My skin would just peel off. I hope it works for you, because I know how toxic prednisone can be.

Hello @awag, Welcome to Mayo Clinic Connect. I also have PMR but it is currently in remission. I have had 2 episodes. The first lasted about 3 years and the second about a year and half. I was started on 20 mg prednisone for both occurrences and was able to taper off with pain at a minimum. The key for me was to maintain some level of activity or mild exercise while tapering off of prednisone and to accept a little pain. The little is subjective for all of us. I have no experience with Plaquenil but hopefully other members can share their experience with you.

You've asked the question that a lot of us would love to know – why does the pain come and go? I'm guessing if they had an answer for the question we would all be doing the happy dance and PMR would be on it's way out the door.

My PMR has mostly been in the hands, arms, shoulders and joints/legs – stiffness with a lot of pain when it was bad. It sounds like your PMR is only in your hips? Has your doctor ruled out any other causes for the hip pain?

Liked by Dee, beryl

@johnbishop

Hello @awag, Welcome to Mayo Clinic Connect. I also have PMR but it is currently in remission. I have had 2 episodes. The first lasted about 3 years and the second about a year and half. I was started on 20 mg prednisone for both occurrences and was able to taper off with pain at a minimum. The key for me was to maintain some level of activity or mild exercise while tapering off of prednisone and to accept a little pain. The little is subjective for all of us. I have no experience with Plaquenil but hopefully other members can share their experience with you.

You've asked the question that a lot of us would love to know – why does the pain come and go? I'm guessing if they had an answer for the question we would all be doing the happy dance and PMR would be on it's way out the door.

My PMR has mostly been in the hands, arms, shoulders and joints/legs – stiffness with a lot of pain when it was bad. It sounds like your PMR is only in your hips? Has your doctor ruled out any other causes for the hip pain?

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Yes, I have had MRIs, X-rays and physical therapy (including dry needling, which set my condition wild). No evidence of anything amiss. My diagnosis seemed to be a process of elimination. The fact that the pain went away so rapidly when I took Prednisone, can came back when those effects wore off, was the main basis for my diagnosis. My pain is worse when I am still for periods of time. Have recently started some mild exercise, which I hope helps.

@michelecallahan

Unfortunately, I had an allergic reaction to plaquenil when I tried it years ago. My feet and hands peeled terribly. My skin would just peel off. I hope it works for you, because I know how toxic prednisone can be.

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No side effects so far – thank goodness. My ophthalmologist ran all sorts of base line tests, which they say is part of the care of patients on this med. With my low dosage, they didn't seem to be too worried, but want to run annual tests, just to be sure. I'll admit, though, that I do miss the prednisone, as it is the ONLY thing that completely eliminates the pain…

@awag

No side effects so far – thank goodness. My ophthalmologist ran all sorts of base line tests, which they say is part of the care of patients on this med. With my low dosage, they didn't seem to be too worried, but want to run annual tests, just to be sure. I'll admit, though, that I do miss the prednisone, as it is the ONLY thing that completely eliminates the pain…

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@awag, the only side effect I had with prednisone was a hefty weight gain on the first occurrence of PMR. I knew what to expect the second time around and was able to keep the weight gain in check more or less within 5 to 10 lbs. Prednisone is the magic pill for PMR for most of us.

Liked by Dee

@johnbishop

@awag, the only side effect I had with prednisone was a hefty weight gain on the first occurrence of PMR. I knew what to expect the second time around and was able to keep the weight gain in check more or less within 5 to 10 lbs. Prednisone is the magic pill for PMR for most of us.

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I was on Prednisone for almost 2 years, and my doctor wanted to move me to another treatment for the longer term. I do still have some hip pain, but not all the time. Am seeing a correlation to my diet and pain, so am testing out eliminating certain kinds of foods to see if that helps. Again, when the pain does wake me up, I use a little high quality CBD lotion and the pain completely goes away in a few minutes, and I can go back to sleep. Right now it is manageable, thank goodness.

I was diagnosed with PMR on Dec. 12th last year. I believe I had it for many months before then, but because I was 90 yrs old thought it was part of being so old. However, I became ill with shingles which prompted a doctor visit which culminated in the PMR diagnosis after a blood test. My symptoms were almost unbearable pain, especially at night, in thighs buttocks and shoulders. The pain would expand in a lesser degree into other parts of my limbs. My doctor immediately put me on a three day dosage of 20mg to calm down the inflammation. It worked. After first dose I slept for 12 hours instead of 2-3 hrs. I am trying to taper myself off the Pred. I am down to 3.75mg in the morning and 2.5 in the evening. Do have some discomfit, but can manage to do my errands, volunteer work etc. In another week or two I will try to lessen dose. If I have to increase again, so be it. I just have to learn to live with it as I can not "will" it away, no matter how hard I try. Hope this helps you. 🙂 Also, I eat a good diet, almost completely vegetarian, organic, with a very small amount of range free meat. Exercise helps.

@noosat1

I was diagnosed with PMR on Dec. 12th last year. I believe I had it for many months before then, but because I was 90 yrs old thought it was part of being so old. However, I became ill with shingles which prompted a doctor visit which culminated in the PMR diagnosis after a blood test. My symptoms were almost unbearable pain, especially at night, in thighs buttocks and shoulders. The pain would expand in a lesser degree into other parts of my limbs. My doctor immediately put me on a three day dosage of 20mg to calm down the inflammation. It worked. After first dose I slept for 12 hours instead of 2-3 hrs. I am trying to taper myself off the Pred. I am down to 3.75mg in the morning and 2.5 in the evening. Do have some discomfit, but can manage to do my errands, volunteer work etc. In another week or two I will try to lessen dose. If I have to increase again, so be it. I just have to learn to live with it as I can not "will" it away, no matter how hard I try. Hope this helps you. 🙂 Also, I eat a good diet, almost completely vegetarian, organic, with a very small amount of range free meat. Exercise helps.

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@beryl……hello noosat1 good to hear that you are doing so well and that the pain is so much better enabling you to do things ….be careful not to go down too fast as you don't want the PMR to come back and spoil your day …….best of luck Beryl

I have been diagnosed with PMR for 3-4 months. I am lowering my dosage on my terms, as I know how my body feels more than anyone else. I started yesterday on 6mg per day, split to morning and evening. I will stay on this for several weeks then try to lower to 5.5. It is hard for me to be patient, but I know it is important to be so. Also, I know I should not drink wine, however, I do have a glass with dinner about three times a week. I think I can do that because I watch the rest of my diet very, very carefully. Little or no processed foods or sugar, anti-inflammatory spices such as turmeric, cinnamon etc. added to dishes I cook. (I use cinnamon and organic stevia on a piece of toast in the morning) Do keep checking this site. I have found lots of valuable information from other posts.

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