The good and bad of Prednisone for PMR

I was diagnosed with PMR in September 2021. I am currently taking 10 mg of prednisone. I have experienced muscle spasms and twitching since the beginning. These have not been painful and occur only when I am lying down.

I have been struggling to reduce my prednisone intake below 10 mg. Recently I spent 3 miserable weeks when I reduced to 9 mg. I was in pain along with fatigue and brain fog. In the third week I discovered this chat group and it has been extremely helpful. The mention of importance of quality of life over speedy withdrawal of prednisone rang very true for me. An earlier post discussed reducing by alternating a current dose with a reduced dose and gradually increasing the days between the two. I began doing this a few days ago but it is too soon to know if it is helpful for me.

I have been on 2.5 mg of prednisone for about 10 years. The only side effect that I have had is thinning of skin, which leads to some bruising and maybe some bleeding with minor abrasions. Under my name I have listed some scientific articles related to long-term prednisone usage that do not note any bad side effects. One of the two articles defined low long-term at 10 mg a day. I wish there were more articles related to PMR and long-term prednisone usage. I only found two.

Thank you for your reply.

Welcome @heatherkathlyn, I think we all struggle some when trying to taper off of prednisone. There are a couple of other discussions you might find helpful on tapering.

-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
-- Prednisone tapering and remission: https://connect.mayoclinic.org/discussion/prednisone-tapering-and-remission/

Have you tried to make any lifestyle changes to help with your PMR symptoms?

Thank you for your response John. My lifestyle has always been reasonably healthy. I eat well, exercise and have enjoyable hobbies. I continue to eat well but PMR has definitely slowed down my ability to exercise. I love to walk but PMR often creates stiffness and pain which makes for fewer walks, shorter distances and less pleasure. I practice TaiChi and have kept that up though less frequently than before PMR. The fatigue and brain fog have also reduced the time I spend on my hobbies.

It has only been a week of alternating 1 day of 10 mg with 2 days of 9 1/2 mg. I do have more energy at the moment. I will report back when I completely drop to
9 1/2.

Hi,
Well, since you asked, I too was completely uninformed about the side effects to the Prednisone for a long time. It was wonderful, having the prednisone to counter the PMR . I too have PMR, and my understanding of it is putting it into remission is the goal. There are two treatments, one is finding what is triggering it (if that's possible) and the only other one is prednisone. I'm not aware that it can be cured. Though, mine is now in remission. It was put in to action by an allergy to cold. Like outdoor cold. I lived in Alaska. The Prednisone worked great on it, but I never was able to reduce it and then find a decent lowe does to stablize it. It was an Opthamologist, covering for the local big box store's Optician, who caught my prednisone caused glaucoma. Prednisone (and other steriods) can cause glaucoma, which can made you go blind. It's not to be taken lightly. Prednisone can also can thin your bones. Maybe a little is not big deal for you, for me it was a problem. By the time a new PCP told me I'd probably have to move down out of Alaska, for my health, my feet had both broken. Believe it or not, my ins company didn't cover feet, there. Then, three of my ribs broke while my eye doctor was getting upset with me for not quiting prednisone, because she knew the glaucoma was slowly making blind spots in my left eye. So, I woke up and smelled it wasn't roses anymore and moved on down, out of Alaska, to WA. There is a laser surgery for the kind of glaucoma I have (open angle). It cured the glaucoma for 5 years, now it's back, and I have to run through the same tests in the run up to the same laser surgery/surgeries again. Oh, and by the time I left Alaska, I had 6 broken ribs and both feet broken. A little trip and fall could do it. One foot had to be rebroken and set with metal wires through it. I hear you on the thin skin. Best to not take any aspirin while that's going on. My left forearm is covered with little white lines from all the times I'd hit some doorknob and the skin would just peal back. Get yourself a box of "butterfly" bandages, run the arm under water to put the skin safely and cleanly back where it belongs, pat dry and put the butterfy bandages on them. Get your eyes checked, with pressure readings, and get a bone density test. Those sides effects can do a number on you.

Hi @thenazareneshul, I'm sorry to hear of your difficulties with prednisone. PMR is an autoimmune disease with genetic markers. Sometimes an accident or trauma can cause the immune system to go into overdrive. My PMR symptoms started with an ankle injury, my aunt's started with an injury to her back.
What dosage of prednisone did you start with and what was your tapering schedule like? I was prescribed 40 mg for Giant Cell Arteritis and tapered down by 5 mg every two weeks after that. Now I'm at 2 mg with no symptoms (knock on wood) and a normal CRP. I do have osteoporosis, but I had a dexa scan right after starting prednisone. I suspect I lost bone density the year I was incapacitated with PMR because prior to that I was physically active, but there is strong history for osteoporosis in my family.
It probably was best for you to move to WA. That must have been difficult! I'm fortunate to have good care in Hawaii. Wishing you the best!

Thank you for the warm wishes. I began the prednisone at 40 mg., back in 2014, and I didn't have GCA, it was just the PMR, alone. Honestly, I can't remember now what the tapering dosages, the drops down from 40 mg were. We tried over and over again, always going back up to 40 mg, and then dropping down, at first by 10 mg, then 10 mg. Each time I got to 20 mg, the lowering of that failed. If I am remembering correctly, by 5 mg. Then, I'd flare again. So, we'd go back to 40 mg, and try it again. Doing the reductions from 20 mg on down each time less, and less, to try to find a plateau I might maintain at, always failed. That winter I started showing Raynaud's Syndrome too. The end result was too much Prednisone at 40 mg over the time period. It was actually my Opthamologist who convinced me to quit the Prednisone. Oh, and I forgot to tell you I gained 80 lbs! When I hit 80 more pounds than I had begun at, I quit the prednisone and made my plans to move to WA. My immune system was all messed up already, besides this and I'm truly grateful that the PMR in remission. It tried to flare, began to flare, last winter one day while my daughter and I were stuck in an ER for a different problem. The cold in there was just way too bad. I wasn't dressed for it, and no one would give me a blanket or something, or just let me even sit in a chair, in the hallway behind the desks. I understood their reasonings but it turned out my daughter and I were both concerned I'd flare. It has to do with when my feet get extra cold too. We don't know what's wrong with my immune system but it's damaged in some way from chemicals I'm now allergic to. So, we left the ER, after asking for accomodation but they just couldn't. It was a Covid variant run on their ER that week, and the hospital literally was out of beds. I had osteoporosis right after a hysterectomy which traumatized a few parts (ovaries) left, so they shut down. That sets women up for osteoporosis. Then, I did infusions two Fall seasons in a row (which I'd never do again) and those worked to bring my bones up to osteopenia instead. Yes, it's true, the old life is gone. Along with it goes many friends and even some relatives that think "the disabled" just want pity and to "play the victim card." I've learned I just must forgive them, even if it's forgiving them for not forgiving me, and move on. I believe that's what really causes the "depression" people keep harping on. Who would not grieve the loss of things like your oldest and dearest friend. Or your own father turning his back on you when you literally can't work and thus, lose the house. Things really changed for me one day when I thought to myself, "I'm going to live before I die. Really live." Since then, I've travelled to Scotland, UK, and many US States. I now live with a daughter, and we share the rent. It works for both of us.

Hi @thenazareneshul, 40 mg of prednisone is an unusually high dosage for PMR (it's usually 20), but in the ballpark for GCA. My rheumatologist told me that some people are on high dosages of prednisone way too long. When my mother-in-law had GCA, the internist she was referred to told her she had a virus, to go home and she'd be better in 3 months. She would have been dead! I had a close friend, a doctor, to whom I sent her symptoms. He referred her to a better physician who diagnosed GCA. She was languishing for months and some relatives thought it was all in her head. People with hidden disabilities are often considered hypochondriacs or malingerers. There's a voluntary "Sunflower" program in which people with hidden disabilities can wear sunflowers to show they need assistance when travelling.

In this forum we share our experiences with others who have been through the same and do not have to worry about being labelled crybabies.

Good for you that you broke through the bonds of "can't do" and went out and did! Is Scotland still beautiful? I was there, many years ago, in Oban.

Take care.

I think that was the problem, we didn't have a Rheumatologist available for anyone there. And when both my feet broke, believe or not, my ins didn't cover setting them. Nothing. I've had small doses of steroids, like injections and have done very well with those. Except I overdose much sooner than those doctors thought I would. The rest of what you've shared is very helpful, too. Thank you. A real blessing. Scotland is, and was, wonderful. We stayed in Glascow and in a village, in a mother-in-law apt, on a pasture just outside of Lockerbie. A place with much history in both places. Hugs to you. Thank you.