How to address PMR pain while decreasing prednisone

Hello, I was diagnosed with PMR nearly a year ago.I woke one morning not being able to move very well in my shoulders and neck, by the next day I could hardly move, turning in bed was a mission as my hips and thighs felt like a dead weight and it was difficult to get comfortable. After trips to have xrays and scans I then had blood test to show the inflammation was very high and then was diagnosed with PMR. I was started on 20mg of Prednisone which gave me almost immediate relief. My symptoms have never completely gone away even on the higher dose, I still have different levels of pain in my shoulders, neck and collarbone. My mood has changed to being very reactive and easily upset and I have also put on around 6 kilos with the addition of the moon face. I also have bouts of intensive sweating, to begin with this was just at night but now happens at random times. I have reduced my dose to 4mg and my symptoms have become worse, I do not want to increase my dosage as I really want to get off this horrible drug. It is nice to be able to read your comments and have someone to feel normal with. Any suggestions would be very much appreciated.

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

John

I am by nature rather an impatient person, however, I have had to force myself to acquire the attribute of patience with this ailment. If I feel cranky, I try to be by myself as much as possible. I am now down to 5mg of prednisone and would like to gat off completely but know that I cannot. I am very slowly tapering. I try to keep my mind engaged in activities, so that I can forget PMR for a while, or at least push it into the background. I am working on a talk to a group of people (not PMR) on the 17th. I read varied materials, fiction as well as non-fiction. I volunteer at the library and at the local Nature Center, and am somewhat involved in local political issues. I have a dog to take care of and be a companion. I try to think of ways that I might increase my activity and strength. Do you have a healthy diet e,g, no sugar. Sugar is sure to bring on flare ups. Look for anti-inflammatory foods and spices. Do get some exercise, even if it just alking around the house. I have found that in a day, I can take 8,000 steps while housebound. That is, if I consciously try to do it.

Hello @lindapc, welcome to Mayo Clinic Connect. Thank you for sharing your story. My first occurrence of PMR lasted 3 years. I was able to gradually taper my dosage down but the last 6 months I was going between 1 mg and 1/2 mg dosage of prednisone. I did have some pain when lowering the dosages but if it was tolerable I tried to stay on the lower dose. One of the things that helped me was to maintain some sort of mild exercise to keep the stiffness away or at least at a minimum. I too had a lot of weight gain with my first occurrence of PMR - about 50 to 60 pounds. It does require some lifestyle changes to keep from gaining extra weight.

Have you discussed the new sweating symptoms with your doctor? I did not have the sweating with my occurrences of PMR but it is one of the known symptoms.
https://www.nhsinform.scot/illnesses-and-conditions/muscle-bone-and-joints/conditions/polymyalgia-rheumatica

I am surprised that you can drink wine for relief. I do have an occasional glass, small, with dinner, however, If I have more than that, I either have trouble sleeping a get a leg cramp during night.

Glad to find somebody to compare different problems with Polymialgia.I was diagnosed over four Years ago,it started as an uncomforable pain i tought came for the Fact i was on Vacation.Not my Mattress etc. I started on a high dose of predison and now i am at 2.5 twice a day. My Dr. tells me i will never get of Predison.Intersting reading different Symptoms.My Pain is somewhat under Controll but i have severe pain in my right Arm.This is the same Problem i had in the beginning but my Dr. tells me it is Carpel Tunnel Sindrom,I had a Cortison Shot by a different Dr but the Pain returned.
Also i also have a recuring Bladder Infection that nobody can explaine.I wonder also if anybody has thinning of the Skin,mostly the Arms.The slightes bump gives me a nasty bruise.Going near a Rosebush is out of the Question.As for the Question about Alcohol,i drink very little,seem to have lost my tast.Hope to hear more of your Ideas,always glad for the Information.Judy

Hi Judy @peanuts1, I see you have been a member for awhile but this is your first post. I would like to welcome you to Mayo Clinic Connect and thank you for sharing your symptoms and treatments. Interesting that your doctor would tell you that you will never get off of prednisone. Is your doctor a rheumatologist? I was first diagnosed with polymyalgia rheumatica (PMR) in 2007 and placed on 20 mg prednisone dosage. It took me 3 years before I was able to taper off of prednisone with minimal pain. My PMR stayed in remission for 6 years before coming back in 2016. Again I started on 20 mg prednisone but was able to taper off in about a year and a half when my PMR went into remission again. I also have carpal tunnel syndrome in my hands but It doesn't cause me much pain so far.

I also have thin skin and bruise easily which I mostly attribute to my old age (75). I do have thin bones (osteoperosis) which I think is a side effect of the prednisone. Mayo Clinic has some information on thin skin here:
https://www.mayoclinic.org/healthy-lifestyle/healthy-aging/expert-answers/thin-skin/faq-20057753
You mentioned that your pain is mostly under control except you have some pain in your right arm and the doctor thought it was carpal tunnel syndrome. This site might help explain it and offer some possible insight.
https://orthoinfo.aaos.org/en/diseases--conditions/carpal-tunnel-syndrome/
Have you discussed trying to taper off prednisone with your doctor? That was the number one goal given to me by my rheumatologist even though he mentioned some people may never be able to completely taper off of prednisone.

John

Good post, John. I do believe exercise helps a lot. For the last 2 days I took over 8,500 steps per day. I was thrilled ! However, to-day will be less, as I worked at Nature Center for 4 hours and was sitting for most of the time. To-morrow I plan to drop from 5mg to 4mg daily. Wish me luck. 🙂

I have the same skin problem, and at first seemed to be bumping into everything I passed, which made it worse. Now I am more careful and balance is better, except when I become very tired. Sorry about the bladder infection. I just need to go more often than I used to. I've got in the habit of not ever passing up a bathroom, when I am out. Even if I din't particularly feel the urge.

Thanks for sharing your story, Peanuts. My Doctor, like yours, told me that I would be on Prednisone the rest of my life. That was in 1999 and perhaps that was the prevailing theory then. I started tapering off Prednisone last summer and by early Feb, this year, was off it completely. Slowly and steadily though, my PMR symptoms returned... the stiffness in the AM, the inability to get into a crouch position, the impossibility to sit down without reaching for things to grab onto... many symptoms, as everyone here knows. So, last week I started on 5 mgs again. Most of my pain has diminished. Like you I also had pain in my right arm (not one of my usual symptoms of PMR) and believe that it could be Carpel Tunnel Syndrome. In the AM I cannot make a fist with my right hand either; is that the same for you? I also had very painful calves which I now believe is a separate issue... poor circulation. Thanks to @johnbishop who suggested I use Compression Stockings; that has been a huge help. It is such a great feeling to see progress. Carina