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

@lindapc

Hello John, thank you for your reply and suggestions. I will be going to see my GP soon and will mention as you suggested. What I would also like to know is, how often should you have blood tests to see how the inflammation in your body is?

The Doctor warned me about the Giant Cell association with this condition and although I do not have eye problems or pain in my temple, I have had a very sore scalp since dropping my meds. Does anyone know if this is a symptom?

I also tried treatment with acupuncture and herbal tea which did help but ended up not able to carry on with this due to the costs, this may be something that works with others as well so just thought I would mention this. I try not to drink coffee with sugar but hot water with fresh ginger sliced into it (Ginger root promotes healthy digestion, helps boosts immunity (antioxidants that boosts immunity and helps fight off infections), aids in cardiovascular health and relieves pain (preventing prostaglandins from setting off an inflammatory response in the body.) Cinnamon also can assist with this.

Myself I dislike taking medication and try my best to heal with what nature has provided, although in this case I understand that there is a place for some medication. I also have hypothyroid which makes me quite tired and a fatty liver, so am concerned with taking the Prednisone as I would suspect that this would give your liver a bit of a trouble.

Although I know that exercise is important I find it very difficult to motivate myself at the moment to get out there and get walking. I work at a desk 2 days a week and have very little movement during that time, the rest of the week I have the good intentions but have got to the point where I do not want to go out as I feel so yuk about myself with the bloated face and the extra pounds…I dont want to have this poor me feeling but find it hard to pull myself out of the dark sometimes with this. Is depression part of the condition or a side effect of the Prednisone, I am normally a very positive person with a can do attitude but am floundering with this.

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@lindapc – I have had GCA and tapered off the Prednisone in October. I did have some soreness in the scalp before being diagnosed but it was just one spot that was a little swollen and the swelling moved down over a few weeks to the area next to my hairline. I was surprised you said you were so tired from being Hypothyroid. I am on Synthroid and the medication took all of my tiredness away. What medication are you taking? I would say that I was a little depressed on the Prednisone but more from just having the GCA and gaining weight. I have never had PMR. As far as the Sed Rate is concerned, I had a blood test done every 3 months for the GCA.

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@tinkerbell

@lindapc – I have had GCA and tapered off the Prednisone in October. I did have some soreness in the scalp before being diagnosed but it was just one spot that was a little swollen and the swelling moved down over a few weeks to the area next to my hairline. I was surprised you said you were so tired from being Hypothyroid. I am on Synthroid and the medication took all of my tiredness away. What medication are you taking? I would say that I was a little depressed on the Prednisone but more from just having the GCA and gaining weight. I have never had PMR. As far as the Sed Rate is concerned, I had a blood test done every 3 months for the GCA.

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@tinkerbell – thank you for your reply it has helped in that I have no swelling on my scalp just sore to touch or comb my hair. I am on thyroxine for my thyroid, but also have a problem with the T3. I did have a time on thyroxine and a T3 made from pigs which made me feel better but unfortunately it is no longer available. I also think that the depression is caused by the prednisone and gaining weight just have to deal with it I suppose. Thank you again. 🙂

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@noosat1

I think I have posted before, I take turmeric, ginger and other spices in my almond "milk" drink, with a little organic stevia to cut any bitter taste. I had one blood test to determine PMR and then another about 4 weeks later to see SED rate. My next one will not be until June, when I have my usual 4 months check up..

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@noosat1 – Thank you for your reply and information it was very helpful. 🙂

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@johnbishop

Hi @lindapc, you ask a good question which I would probably ask your GP when you see them. Mayo Clinic has some information on the Sed rate (erythrocyte sedimentation rate) test here: https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797. My primary care doctor normally schedules the test for me if he suspects my PMR might be coming back or to check to see where my treatment is at (I think).

I have been taking liquid turmeric (orange flavored ☺) to hopefully help reduce inflammation and I think it's helping. It's much better than the way I used to take it – organic turmeric powder mixed in a smoothie which made me not look forward to a breakfast smoothie. I recently started drinking ginger-turmeric tea recommended by another member @lioness which I get from Trader Joe's Market. It's not too bad and fairly inexpensive.

If you ever need some positive pick-me-up feelings, check out the videos on https://www.resilientoption.com/. The VLOG page has some great short videos.

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@johnbishop – Hi John, thank you for the information and links you have given me it was very helpful. I will see if I can purchase the tea you have mentioned here in New Zealand and give it a try. Big thanks once again, it really does help talking to people who are experiencing the same thing. 🙂

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@lindapc

@johnbishop – Hi John, thank you for the information and links you have given me it was very helpful. I will see if I can purchase the tea you have mentioned here in New Zealand and give it a try. Big thanks once again, it really does help talking to people who are experiencing the same thing. 🙂

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If you like to make your own ginger turmeric tea, here is a recipe…

https://www.allrecipes.com/recipe/242148/ginger-turmeric-herbal-tea/

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@lindapc

@tinkerbell – thank you for your reply it has helped in that I have no swelling on my scalp just sore to touch or comb my hair. I am on thyroxine for my thyroid, but also have a problem with the T3. I did have a time on thyroxine and a T3 made from pigs which made me feel better but unfortunately it is no longer available. I also think that the depression is caused by the prednisone and gaining weight just have to deal with it I suppose. Thank you again. 🙂

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@lindapc – I agree that the gaining weight has been the hardest for me. I started on 60 mg and got the swollen face, neck, stomach, midriff and more. I asked my Endocrinologist when the weight gain would go away and she said it would take a long time. I gained 13 lbs and lost 7 just from water weight. Now the next 6 must just be fat. It is very difficult to lose. I take a diuretic for my blood pressure and I think that saved me from gaining more weight.

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I take a diuretic also and think it may help. I had gained about 10lb before being diagnosed, now I am just trying not to gain any more. Physician says not to worry about weight gain at this time. However, If I could lose the 10lb, I believe my body would cope better with the osteoarthritis

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I was diagnosed with PMR Nov 2017 and am 52 yrs old. I started at 20mg of prednisone and the pain magically went away within a day and the amazing energy I had was incredible. I am now tapering off or trying too. I have reduced the medication down to 4.5mg however at that dose the pain came back not as bad as not being on anything, however I am wakened in the night with throbbing knee pain. The elbow and shoulder pain too is starting to come back. I recently seen the specialist and he suggested I go back up to 6mg which I have just done. Now how do I lower to get off of the prednisone, I was tapering every 2 weeks, is that too often? Also I had a blood test and the White blood count was high, is that due the to the PMR or prednisone? Does anyone know why we get this PMR is it due to stress? thanks for your input

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@ambershe

I was diagnosed with PMR Nov 2017 and am 52 yrs old. I started at 20mg of prednisone and the pain magically went away within a day and the amazing energy I had was incredible. I am now tapering off or trying too. I have reduced the medication down to 4.5mg however at that dose the pain came back not as bad as not being on anything, however I am wakened in the night with throbbing knee pain. The elbow and shoulder pain too is starting to come back. I recently seen the specialist and he suggested I go back up to 6mg which I have just done. Now how do I lower to get off of the prednisone, I was tapering every 2 weeks, is that too often? Also I had a blood test and the White blood count was high, is that due the to the PMR or prednisone? Does anyone know why we get this PMR is it due to stress? thanks for your input

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High white blood count is due to the pred. See how you feel on six mg. Do you have recent cpr and sed rate results?

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@ambershe

I was diagnosed with PMR Nov 2017 and am 52 yrs old. I started at 20mg of prednisone and the pain magically went away within a day and the amazing energy I had was incredible. I am now tapering off or trying too. I have reduced the medication down to 4.5mg however at that dose the pain came back not as bad as not being on anything, however I am wakened in the night with throbbing knee pain. The elbow and shoulder pain too is starting to come back. I recently seen the specialist and he suggested I go back up to 6mg which I have just done. Now how do I lower to get off of the prednisone, I was tapering every 2 weeks, is that too often? Also I had a blood test and the White blood count was high, is that due the to the PMR or prednisone? Does anyone know why we get this PMR is it due to stress? thanks for your input

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Hello, @ambershe, just read your comments re throbbing knee pain during the night…have you ever been awakened by badly itching and painful legs? Just wondered. I don’t think anyone knows why we get PMR. Guess we have to be thankful for prednisone. Also, it’s hard to find out if what we are experiencing is being caused by prednisone or PMR. Hope you have good support…it’s so important. Hang in there.

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@ambershe

I was diagnosed with PMR Nov 2017 and am 52 yrs old. I started at 20mg of prednisone and the pain magically went away within a day and the amazing energy I had was incredible. I am now tapering off or trying too. I have reduced the medication down to 4.5mg however at that dose the pain came back not as bad as not being on anything, however I am wakened in the night with throbbing knee pain. The elbow and shoulder pain too is starting to come back. I recently seen the specialist and he suggested I go back up to 6mg which I have just done. Now how do I lower to get off of the prednisone, I was tapering every 2 weeks, is that too often? Also I had a blood test and the White blood count was high, is that due the to the PMR or prednisone? Does anyone know why we get this PMR is it due to stress? thanks for your input

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Hi @ambershe, welcome to Mayo Clinic Connect. I also have polymyalgia rheumatica (PMR) but it is currently in remission. I've had two occurrences of it 6 years apart. The first time it lasted about 3 years, all of the while I was trying to taper off. My rheumatologist helped me with a tapering plan. I also learned that it's different for everyone but the key is slow and easy. Like other members have mentioned, I don't really think they know what causes it other than they think the bodies autoimmune system attacks connective tissues and they think it may involve genetics. My mother had rheumatoid arthritis so it made sense to me since my rheumatologist explained it in layman's terms to me as arthritis all over the body. Sometimes even 1/2 mg dosage changes up or down can make a difference when tapering. This last occurrence of PMR I had I did most of the tapering on a weekly basis and if the pain was too much at the next lower dosage I bumped it up half of the decrease that brought the pain for 3 days to see if the pain would go away or become more tolerable.

Here's some information that talks about white blood count and prednisone dosage.

Prednisone-induced leukocytosis. Influence of dosage, method and duration of administration on the degree of leukocytosis.
https://www.ncbi.nlm.nih.gov/pubmed/7304648

Did your doctor give you a tapering plan? I used a 2 week plan and sometimes went down to weekly or every three days when I felt really good. The key for me was working on healthy eating and some form of mild exercise without over doing it. Key word for me was "working" on it because it was hard for me to break some really bad snacking habits. Another tip someone passed on to me was eating foods that help fight inflammation — https://www.health.harvard.edu/staying-healthy/foods-that-fight-inflammation

Liked by Dee

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@ambershe

I was diagnosed with PMR Nov 2017 and am 52 yrs old. I started at 20mg of prednisone and the pain magically went away within a day and the amazing energy I had was incredible. I am now tapering off or trying too. I have reduced the medication down to 4.5mg however at that dose the pain came back not as bad as not being on anything, however I am wakened in the night with throbbing knee pain. The elbow and shoulder pain too is starting to come back. I recently seen the specialist and he suggested I go back up to 6mg which I have just done. Now how do I lower to get off of the prednisone, I was tapering every 2 weeks, is that too often? Also I had a blood test and the White blood count was high, is that due the to the PMR or prednisone? Does anyone know why we get this PMR is it due to stress? thanks for your input

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@ambershe -Hi…I too have been reducing my meds from 20mg, my Doctor recommended reducing it monthly and it worked to a certain extent. I also listened to my body and symptoms and if still there did not drop till things settled. I find when I reduce the dose I normally have more pain in my shoulders and neck and that is what I have judged it by when reducing. I was on 5mg for over 4 weeks as I just did not feel well enough to drop the dosage, around 6 weeks I reduced to 4mg and my symptoms came back and have slowly settled over a period of weeks, still there but as you say not the same as without meds and for me bearable. I will stick to the 4mg until my body adjusts. I find that each drop the symptoms return but over the weeks they slowly reduce and get to a point where I can drop another mg. I too have had severe pain in my knees that I did not have originally, not there all the time but bouts of this where they just ache and I can not kneel on them. Regarding your question if PMR is caused by stress, I feel that mine was. I had a terrible year where my mother passed and then my sister also within 3 months of my mother. At that time also my son was hospitalized with a mental condition and I feel that all this just caught up with me and became too much. I also notice that if I get stressed then my symptoms feel worse. Maybe something for you to note if your systems flare up if you have had stress prior to it. I keep a journal each day of how I feel and put down what things I eat and how I am feeling. This is good to look back on if you want to see a pattern. I hope this helps and good luck with reducing your meds.

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@lindapc

@ambershe -Hi…I too have been reducing my meds from 20mg, my Doctor recommended reducing it monthly and it worked to a certain extent. I also listened to my body and symptoms and if still there did not drop till things settled. I find when I reduce the dose I normally have more pain in my shoulders and neck and that is what I have judged it by when reducing. I was on 5mg for over 4 weeks as I just did not feel well enough to drop the dosage, around 6 weeks I reduced to 4mg and my symptoms came back and have slowly settled over a period of weeks, still there but as you say not the same as without meds and for me bearable. I will stick to the 4mg until my body adjusts. I find that each drop the symptoms return but over the weeks they slowly reduce and get to a point where I can drop another mg. I too have had severe pain in my knees that I did not have originally, not there all the time but bouts of this where they just ache and I can not kneel on them. Regarding your question if PMR is caused by stress, I feel that mine was. I had a terrible year where my mother passed and then my sister also within 3 months of my mother. At that time also my son was hospitalized with a mental condition and I feel that all this just caught up with me and became too much. I also notice that if I get stressed then my symptoms feel worse. Maybe something for you to note if your systems flare up if you have had stress prior to it. I keep a journal each day of how I feel and put down what things I eat and how I am feeling. This is good to look back on if you want to see a pattern. I hope this helps and good luck with reducing your meds.

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Good post ! I too keep record of eating, drinking and activity. Last night had some ankle pain and calf discomfit. However, after getting out of bed and moving for a few minutes was O.K. The three days preceding, I had been extremely active, consequently I am staying on 4.5mg that I had tapered to 2 days ago and will see what happens. Took it easy to-day. Yes, stress is a definite factor. Try to a quiet time each day, just breathing and being.

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@noosat1

Good post ! I too keep record of eating, drinking and activity. Last night had some ankle pain and calf discomfit. However, after getting out of bed and moving for a few minutes was O.K. The three days preceding, I had been extremely active, consequently I am staying on 4.5mg that I had tapered to 2 days ago and will see what happens. Took it easy to-day. Yes, stress is a definite factor. Try to a quiet time each day, just breathing and being.

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@noosat1 Seems like we are like minded in our thoughts, so important to see if there are certain triggers that you can avoid. I also do a 15-30 min youtube music for meditation and just sit and listen, I feel very relaxed after and feel that this helps with just being in the moment. Thats all you can do really. Good luck with reducing your meds and would like to know how you get on. 🙂

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@lindapc

@noosat1 Seems like we are like minded in our thoughts, so important to see if there are certain triggers that you can avoid. I also do a 15-30 min youtube music for meditation and just sit and listen, I feel very relaxed after and feel that this helps with just being in the moment. Thats all you can do really. Good luck with reducing your meds and would like to know how you get on. 🙂

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This morning Sunday, had leg pain, but am not going to go up on the Prednisone. I want, know I can bear the pain, to go at least a week on the slightly lower dose to see if the adrenals kick in. Right now I am watching the birds at feeder. This year I have had many more woodpeckers, some as small as about 4" long. There must be some nesting near me. To-day, I am preparing feeders and food for the hummingbirds. They are due to arrive within the week. These kind of tasks, I find soothing. Hope you are doing well. 🙂

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