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

@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.

Jump to this post

Sounds very similar to what I am going through too. I have just gone back up to 6mg and will stay on each drop longer than 2 weeks, as 2 weeks seem to soon. I like what you wrote about, " over the weeks the pain will slowly reduce " so I can see you have to try to be patient with the pain that will come back after each drop in mg. This will just be a very very slow process of tapering down. Sorry for all your loses. I would agree that this can be brought on by stress. Good luck with your tapering down too and let me know how you do.

REPLY
@johnbishop

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

Jump to this post

thanks so much for the info. I think I will just have to go a lot slower on tapering down. When you actually do go into remission, how do you know? Does all the pain actually just start to go away? I agree with you on the genetics as my grandmother was in a wheelchair with rheumatoid arthritis.

REPLY
@rogernj67

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?

Jump to this post

The CRP rate is only 1.4 now where before prednisone it was really high. I am not sure what SED is, I cannot find it on the list of tests

REPLY
@ambershe

thanks so much for the info. I think I will just have to go a lot slower on tapering down. When you actually do go into remission, how do you know? Does all the pain actually just start to go away? I agree with you on the genetics as my grandmother was in a wheelchair with rheumatoid arthritis.

Jump to this post

@ambershe in both my occurrences of PMR the pain did go almost completely away when I was finally able to stop taking prednisone. By almost I mean I always have a little pain and stiffness when I first get up in the morning. I do 10 to 15 minutes on an elliptical exercise machine each morning plus some leg strengthening and stretching exercises to help get me ready for the day. I still have to be careful when I first stand up after sitting for awhile but that's more due to a bad knee that I'm hoping to get replaced next month.

REPLY
@noosat1

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. 🙂

Jump to this post

@noosat1 – I hope the pain lessens for you , its so hard with reducing the meds. My Doctor told me that they have found the slower you reduce the better it is and that is why they have recommended every 4 weeks for me, but like I said sometimes I know that it is not time and leave it around 6 weeks till it settles…my symptoms do not settle within 2 weeks of dropping so I know it would not be beneficial for me to try, patients is the name of the game. 🙂 but, in saying that each of us is different and may heal quicker. I too feed birds and love watching them especially when they have young ones, mostly sparrows, finches,blackbirds and thrush. Would love to see hummingbirds and woodpeckers in my garden but alas we do not have them here in New Zealand. I am into photography and that also helps me as I get lost in it and time is not relevant to me. Keep well 🙂

REPLY
@ambershe

Sounds very similar to what I am going through too. I have just gone back up to 6mg and will stay on each drop longer than 2 weeks, as 2 weeks seem to soon. I like what you wrote about, " over the weeks the pain will slowly reduce " so I can see you have to try to be patient with the pain that will come back after each drop in mg. This will just be a very very slow process of tapering down. Sorry for all your loses. I would agree that this can be brought on by stress. Good luck with your tapering down too and let me know how you do.

Jump to this post

@ambershe – thank you for your kind words. I suppose we are all different and heal at slower or faster pace, its just listening to your body and knowing when you are ready. My Doctor and Rheumatologist informed me that they found better results with slow reduction so told me to do the 4 weeks then drop, I have tried 3 weeks but ended up staying longer on the lowered dose (6 weeks) as it took quite a while for me to feel less pain and know I was ready to reduce. Its very hard when you just want to be off the meds but thats where I suppose your patients comes in….as the saying goes. Good things come for those who wait. 🙂

REPLY
@johnbishop

@ambershe in both my occurrences of PMR the pain did go almost completely away when I was finally able to stop taking prednisone. By almost I mean I always have a little pain and stiffness when I first get up in the morning. I do 10 to 15 minutes on an elliptical exercise machine each morning plus some leg strengthening and stretching exercises to help get me ready for the day. I still have to be careful when I first stand up after sitting for awhile but that's more due to a bad knee that I'm hoping to get replaced next month.

Jump to this post

@johnbishop – I was interested in your comment John regarding when you went off the meds that you still had some sort of stiffness. It will help to know that I may not be completely pain free and able to stay off the meds. But, in saying that I have made my decision once off that unless I get to a state where it really affects my life then I would rather put up with the stiffness and stay off prednisone. I keep giving my body positive affirmations that this condition will leave me and I will be rid of it. Hopefully my body listens to me. 🙂

REPLY
@lindapc

@noosat1 – I hope the pain lessens for you , its so hard with reducing the meds. My Doctor told me that they have found the slower you reduce the better it is and that is why they have recommended every 4 weeks for me, but like I said sometimes I know that it is not time and leave it around 6 weeks till it settles…my symptoms do not settle within 2 weeks of dropping so I know it would not be beneficial for me to try, patients is the name of the game. 🙂 but, in saying that each of us is different and may heal quicker. I too feed birds and love watching them especially when they have young ones, mostly sparrows, finches,blackbirds and thrush. Would love to see hummingbirds and woodpeckers in my garden but alas we do not have them here in New Zealand. I am into photography and that also helps me as I get lost in it and time is not relevant to me. Keep well 🙂

Jump to this post

Thank you for the encouragement. I know I am an impatient person. My daughter says, "Mother, stop trying to will yourself better." 🙂
Yes, I do enjoy the hummingbirds, they are so incredibly small, fast and aggressive. I am originally from Australia, so I do miss the parrots. To-day I was going to take it easy, but found myself pruning salvia bushes, working on pots on the deck and carrying rocks for a very small garden I am building. However, I would stop and do some reading etc. when my old arthritic back began to bother me. To-night will be one of the rare nights when I take a Xanax before bedtime, as the mind keeps racing in overdrive. To-morrow is supposed to be much colder and rainy so will have an enforced rest. Maggie 🙂

REPLY
@johnbishop

Hi @anniegal, thank you for the private messaages. I would like to welcome you to Mayo Clinic Connect. You mentioned you figured out how to subscribe to the discussion but now you would like to know how to post a question or observation. There is a link in the left column at the bottom of every page on Connect – Get Started on Connect. This guide has step by step instructions for how to get the most out of Connect. Here is a link to the How to Take Part in a Discussion topic with step by step instructions:

https://connect.mayoclinic.org/get-started-on-connect/#take-part-in-a-discussion

Are you able to share what brings you to Connect? Do you have any questions or observations about polymyalgia rheumatica (PMR)?

John

Jump to this post

I am wondering if others have had a missed dx of PMR and if so, for how long? l have recently been diagnosed by a top rheumatologist as having PMR despite normal labs. I have had crippling pain for years. I was told over and over again by other doctors it could not be PMR because my SED rate and C Reactive Protein results were normal. Dx’ed Graves in 1993, fibromyalgia 1996.
Prednisone feels like a get out of jail card. Started 2/14/2019. Now at eleven mg.

REPLY

Hi @anniegal, Did the prednisone get rid of the pain? Here is some information I found that may help with your question of diagnosis of polymyalgia rheumatica (PMR).

Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/

You mentioned that the prednisone works for the pain and you are now at 11 mg dosage. Did you start at 20 mg? I've had 2 occurrences of PMR. Both were treated starting with a 20 mg dosage but everyone is a affected a little differently by prednisone and PMR.

Liked by lioness

REPLY
@anniegal

I am wondering if others have had a missed dx of PMR and if so, for how long? l have recently been diagnosed by a top rheumatologist as having PMR despite normal labs. I have had crippling pain for years. I was told over and over again by other doctors it could not be PMR because my SED rate and C Reactive Protein results were normal. Dx’ed Graves in 1993, fibromyalgia 1996.
Prednisone feels like a get out of jail card. Started 2/14/2019. Now at eleven mg.

Jump to this post

I was dx with RA in 2011 and PMR in December on 2018. I also have normal SED and C reactive protein. I started on 20 mg prednisone with almost immediate pain relief. I am down to 7.g at this time.

REPLY
@anniegal

I am wondering if others have had a missed dx of PMR and if so, for how long? l have recently been diagnosed by a top rheumatologist as having PMR despite normal labs. I have had crippling pain for years. I was told over and over again by other doctors it could not be PMR because my SED rate and C Reactive Protein results were normal. Dx’ed Graves in 1993, fibromyalgia 1996.
Prednisone feels like a get out of jail card. Started 2/14/2019. Now at eleven mg.

Jump to this post

@anniegal Welcome to connect I was told years ago I had RA but Dr here says my C reactive ct and sed rate are normal Im seeing s new rheumatologist and will talk to him about this

REPLY
@lioness

@anniegal Welcome to connect I was told years ago I had RA but Dr here says my C reactive ct and sed rate are normal Im seeing s new rheumatologist and will talk to him about this

Jump to this post

Hi Annie, thanks for your welcome. A 2nd or 3rd opinion is a good idea. I was lucky to have been able to see this new Dr who diagnosed me with Sjogren's Syndrome, the "dry eye, dry mouth" disorder. On the 24th of April I return to visit this new Doc, as well as a Rheumatologist. My current pulmonologist folded his arms and crossed his legs and said, "I don't know what's wrong with you." Great. Stay on 40 mg Prednisone. That was Sept 11, 2018. Was having very much difficulty with my breathing, I was gasping like a fish out of water after climbing 1 slight of stairs. He kept telling me to hang tight, do another CT Scan in 2 months. In the meantime, I was having pretty low O2 sat rates. I will probably ask the Pulm why he didn't run more tests, etc. to TRY to find out what is wrong with me. This could have been done last fall. I see $$ signs all over.

REPLY
@lioness

@anniegal Welcome to connect I was told years ago I had RA but Dr here says my C reactive ct and sed rate are normal Im seeing s new rheumatologist and will talk to him about this

Jump to this post

Is this Ed Wright stay up with polymyalgia rheumatica? My husband's is normal.

REPLY
@dixiebell

Is this Ed Wright stay up with polymyalgia rheumatica? My husband's is normal.

Jump to this post

Sed rate, oops

REPLY
Please login or register to post a reply.