How to address PMR pain while decreasing prednisone

@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.

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

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?

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.

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. 🙂

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.

@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.

@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 🙂

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