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

@rachelp

You are so right about the markers, and I am grateful for your comments. My inflammatory markers were, initially, high. After a short period of treatment with prednisone, they dropped into the normal range. After about six months of reduction in dosage, as the dosage decreased, the pain increased. My doctor(s) would not accept that the PMR was still alive and well in my body because the markers did not reflect that. After a year (and four opinions later), I went to the Mayo Clinic in Jacksonville, FL. Within a short period of time, the rheumatologist told me that I was one of the people for whom the markers had no meaning. She increased the prednisone, and the pain went away.

Because of what I experienced, I have often wondered how many patients have an autoimmune disease which is affecting their quality of life, and it is going undiagnosed because some doctors are depending entirely upon elevated markers for inflammation to make their diagnosis.

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@rachelp What doctors were you seeing? I went almost a year with no diagnosis except that my gallbladder didn’t look good so they removed it. No one ever mentioned inflammatory markers. It wasn’t until I was taken to the ER in bad shape that they looked for inflammation and, boy, did I have it in my brain! A neurologist in Denver is treating me now. Everything affects my quality of life! Guess I’ll just have to accept this new 80% life.
I’m so glad you got to Mayo Clinic. Are your records sent to the local MDs who didn’t believe what you were saying? My MD gets everything so she knows what’s going on.
Long road…..

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@johnbishop

Hi @kdmorris, welcome to Connect. Thank you for sharing your journey with PMR/GCA and how you were able to manage tapering off. It really helps others when you can share what worked for you.

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Hello this is Beryl …..have an update on my condition …….our travels to Sicily were too much and coursed my PMR to spread to my waist …..now gone down to the hips and of course a lot more pain with it ……
Had my six month visit to OHSU in Portland and my Doctor, to put a long story short , wants to get me off Preds as I have been on it for ten years …..and has put my preds up to seven and a half for two weeks to get the inflamation down, and then five until I see him again….added to this is Methotrexate and folic acid…..tapering …..so it's watch this space and see how I get on with this new mix of meds….well must smile and put on a happy face …….Beryl

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@beryl

Hello this is Beryl …..have an update on my condition …….our travels to Sicily were too much and coursed my PMR to spread to my waist …..now gone down to the hips and of course a lot more pain with it ……
Had my six month visit to OHSU in Portland and my Doctor, to put a long story short , wants to get me off Preds as I have been on it for ten years …..and has put my preds up to seven and a half for two weeks to get the inflamation down, and then five until I see him again….added to this is Methotrexate and folic acid…..tapering …..so it's watch this space and see how I get on with this new mix of meds….well must smile and put on a happy face …….Beryl

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Thinking of your struggles, Hope it all works out for the best. ( Think of the best of times you spent while on your European holiday .)

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@becsbuddy

@rachelp What doctors were you seeing? I went almost a year with no diagnosis except that my gallbladder didn’t look good so they removed it. No one ever mentioned inflammatory markers. It wasn’t until I was taken to the ER in bad shape that they looked for inflammation and, boy, did I have it in my brain! A neurologist in Denver is treating me now. Everything affects my quality of life! Guess I’ll just have to accept this new 80% life.
I’m so glad you got to Mayo Clinic. Are your records sent to the local MDs who didn’t believe what you were saying? My MD gets everything so she knows what’s going on.
Long road…..

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I am seeing a rheumatologist on Thursday,( not affiliated with the Mayo ), Yale Hospital doctor. First time visit because my symptoms are now full blown.

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You're still moving. 🙂

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@noosat1

You're still moving. 🙂

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So true , should not complain , the world has much worse suffering !

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@sallygosse

Hi Barry
Mine started 2 years ago the same way. I was the most active woman i knew…travelling solo to India and Kenya…had my own business..building rock walls and gardens..etc etc. Then such a sudden screatching halt! The pain from head to toe, debilitating fatigue, i couldnt even bend over. 20 mg of prednisone and voila! I was back to myslf. I have been trying to reduce ever since and am now at 7mg. Today i am in pain but will take a T3 and that will clear up the day without upping the pred. I dont know that i will ever get completely off it, but i take comfort in knowing the side effects under about 9mg are negligible. I tòo have pain in my fingers and cant wear rings anymore because of the swelling. But
…..i give thanks everyday that it is not worse…and that it is not life threatening. Good luck with your reduction! I hope one day to be off it too!

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that makes sense why I struggle to take my rings off/on. Wondered why my finger seemed so much bigger now. I guess that could be from prednisone, not sure. I am down to 4 MG finally from 20 MG and find a bit more stiffness in the morning and hoping it will settle down by a months time so I can try to lower prednisone again. Wonder if remission means there is no pain at all or if you still feel slight stiffness. Very grateful though as there could be much worse we could be dealing with.

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@becsbuddy

@rachelp The trouble prednisone causes! Don’t I know! I, too, had vision changes which meant new glasses—not cheap. I have been seeing an ophthalmologist because of another vision prob so he watches out for cataracts. As for sweating problems, I had those, also. I get so warm and uncomfortable, but never actually sweat. I barely used a blanket this winter! Night sweats went away after awhile, thank heavens. I’ll be glad when I can taper off!

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Just reading that many people are having trouble getting below 3-4 MG of prednisone (you'd think that small of an amount would not make that much of a difference, but it must!) I am down to 4 MG and doing okay, feeling some stiffness but hoping it will go away once my body gets used to the lower 4mg amount, so I can hopefully lower again. I went to the Rheumotogist this week and told him about the change in vision so he booked me into an eye specialist (ophthalmologist) whom I luckily get to see this week. Wishing you Good luck as you too try to taper down from prednisone.

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@becsbuddy

I just hate when my vision isn’t good! I’m so sorry yours is blurry. Have you seen an ophthalmologist (not an optometrist)? Ophthalmologists are doctors who are highly trained in diseases and conditions of the eye. My vision changed 3 times last year! The ophthalmologist said that prednisone can affect vision. The doctor can also evaluate the health of your eyes and is god to add to your list of MDs. I certainly hope things go well for you and your vision gets straightened out. Becky

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Yes, I get to see the ophthalmologist this week as my rhumatoligist (all these long doctor names lol) referred me, so I will see what is going on with vision. I am concerned that the prednisone maybe has interfered with my vision, and was hoping as I am trying to taper down (at 4MG) vision would become clearer. thanks for your reply and Good luck to you too!!

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@ambershe

Yes, I get to see the ophthalmologist this week as my rhumatoligist (all these long doctor names lol) referred me, so I will see what is going on with vision. I am concerned that the prednisone maybe has interfered with my vision, and was hoping as I am trying to taper down (at 4MG) vision would become clearer. thanks for your reply and Good luck to you too!!

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I'm not sure if it was the prednisone, however, my night vision became a lot worse, and I ended up having cataract surgery, which I probably would have anyway at my age, 71. I was diagnosed with GCA which can affect eyesight and cause blindness if not caught. Relieved that I was diagnosed!!! 10 mg, down from 60 in July.

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Had a slew of blood tests, waiting for results , doctor said symptoms are that of PMR. or could be LUPUS. Doctor is cautious of steroids because of my osteoporosis>>>
Also , does anyone experience a heaviness on chest , and always trying to catch a breath ???????

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Well I have made it to 1mg of Prednisone from 20mg and feeling a little stiff in my shoulders but not too bad. Hopefully I can completely come off this after a month, can anyone tell me do you just drop to nothing from the 1mg or do you halve it or every other day take 1 mg? Also, I have put on quite a bit of weight especially around my middle, has anyone else had this and how long does it take to get rid of all the excess you have from being on Prednisone? Any information would be a help.

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@lindapc

Well I have made it to 1mg of Prednisone from 20mg and feeling a little stiff in my shoulders but not too bad. Hopefully I can completely come off this after a month, can anyone tell me do you just drop to nothing from the 1mg or do you halve it or every other day take 1 mg? Also, I have put on quite a bit of weight especially around my middle, has anyone else had this and how long does it take to get rid of all the excess you have from being on Prednisone? Any information would be a help.

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Hi @lindapc, my PMR is currently in remission but I started on 20 mg of prednisone both times. The first occurrence took me 3 years to taper off and the last 6 months or so was going between 1 mg and 1/2 mg until I was finally able to stop taking it with a minimum amount of discomfort. I used a pill cutter to split the 1 mg tablets. I gained a lot of weight the first time around. Not sure exactly how much but it was 50 lbs or more. The second time around I was more conscious of the problem of gaining weight and was able to keep it between 5 and 10 lbs. There are other sites with information on how to control the weight gain but here are a couple that do a good job of summarizing. Exercise really helps but I believe the key is to not overdo the exercise to where it causes your pain to be worse.

ILD Nutrition Manual: Prednisone and Weight Gain
https://www.ucsfhealth.org/education/ild_nutrition_manual/prednisone_and_weight_gain/
Why do people gain weight on Prednisone?
https://www.helpfightra.org/weight-gain-on-prednisone/

Here's some ideas to help with staying more active.

3 Strategies for Coping with Polymyalgia Rheumatica (PMR)
https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

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@johnbishop

Hi @lindapc, my PMR is currently in remission but I started on 20 mg of prednisone both times. The first occurrence took me 3 years to taper off and the last 6 months or so was going between 1 mg and 1/2 mg until I was finally able to stop taking it with a minimum amount of discomfort. I used a pill cutter to split the 1 mg tablets. I gained a lot of weight the first time around. Not sure exactly how much but it was 50 lbs or more. The second time around I was more conscious of the problem of gaining weight and was able to keep it between 5 and 10 lbs. There are other sites with information on how to control the weight gain but here are a couple that do a good job of summarizing. Exercise really helps but I believe the key is to not overdo the exercise to where it causes your pain to be worse.

ILD Nutrition Manual: Prednisone and Weight Gain
https://www.ucsfhealth.org/education/ild_nutrition_manual/prednisone_and_weight_gain/
Why do people gain weight on Prednisone?
https://www.helpfightra.org/weight-gain-on-prednisone/

Here's some ideas to help with staying more active.

3 Strategies for Coping with Polymyalgia Rheumatica (PMR)
https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

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Hi@johnbishop thank you for your reply and information it was very helpful. The information was more on not gaining weight when on prednisone, can you tell me how long it took you to get rid of the excess weight you had gained and how you went about it. I have the moon face plus gained weight around 10kg, Does the moon face and middle weight go after you get off the prednisone or do you have to diet and excercise?

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@lindapc

Hi@johnbishop thank you for your reply and information it was very helpful. The information was more on not gaining weight when on prednisone, can you tell me how long it took you to get rid of the excess weight you had gained and how you went about it. I have the moon face plus gained weight around 10kg, Does the moon face and middle weight go after you get off the prednisone or do you have to diet and excercise?

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@lindapc, I think the moon face will go away once the prednisone dosage gets lower according to what I've read. I had to do some lifestyle changes to get rid of the extra weight I gained the first time my PMR occurred. I did do some dieting and exercising to lose the weight. I was also looking for answers for my small fiber peripheral neuropathy and had read a book by Dr. Terry Wahls – The Wahls Protocol. I used her basic diet and some of her smoothie recipes for my breakfast. I got to liking the green smoothies and will occasionally make one for my breakfast meal. She has a really inspiring story on her website here: https://terrywahls.com/about/about-terry-wahls/. I also joined Weight Watchers when I was struggling the most but finally realized that I had to make some lifestyle changes to control the weight and while Weight Watchers provided support and accountability I thought I could do it on my own for free if I made up my mind. I also purchased an inexpensive hybrid recumbent exercise bike elliptical combo and used it first thing each morning for about 30 minutes when I got up. It really helped loosen my legs and got me going in the mornings and it wasn't too strenuous.

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