How to address PMR pain while decreasing prednisone

@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.

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

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

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?

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.

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

@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.

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.

@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. 🙂

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. 🙂