Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Hi all. I'm a month into my PMR diagnosis. I feel like my life has been turned upside down, but am determined, somehow, to figure this all out. My rheumatologist put me on 20mg Prednisone for 3 days, 15 mg for 3 days, and am now on 10mg/day. I take it late at night. Plan is to taper 1mg/mo. (He mentioned adding hydroxychloroquine if unable to taper w/o symptoms.) I am, by no means, symptom free, but am trying to learn to manage. Some days are better than others. I have greatly reduced activities outside the home and am watching what I eat. For those who have (unfortunately) more experience with this beast, are the symptoms always present through the tapering process? Can you ever be symptom-free without the higher dose of prednisone? I want to minimize the drug regimen, but don't want to compromise the goal of remission. Does anyone ever achieve remission under 1 year?

I have already appreciated all who have shared on this site. I don't see my rheumo until early May so just trying to find my way.

Hi all. I'm a month into my PMR diagnosis. I feel like my life has been turned upside down, but am determined, somehow, to figure this all out. My rheumatologist put me on 20mg Prednisone for 3 days, 15 mg for 3 days, and am now on 10mg/day. I take it late at night. Plan is to taper 1mg/mo. (He mentioned adding hydroxychloroquine if unable to taper w/o symptoms.) I am, by no means, symptom free, but am trying to learn to manage. Some days are better than others. I have greatly reduced activities outside the home and am watching what I eat. For those who have (unfortunately) more experience with this beast, are the symptoms always present through the tapering process? Can you ever be symptom-free without the higher dose of prednisone? I want to minimize the drug regimen, but don't want to compromise the goal of remission. Does anyone ever achieve remission under 1 year?

I have already appreciated all who have shared on this site. I don't see my rheumo until early May so just trying to find my way.

That’s a question I still have….what is the goal? To get off prednisone after you are in remission (no more symptoms) or as soon as you can stand to be with out it.
Is prednisone helping us heal or just relieving the pain…both?

Thank you for helping me frame the questions I need to ask my doctors.

What happened to me was that prednisone was started initially to "manage my symptoms." Unfortunately, prednisone wasn't all that effective at putting PMR quickly into remission. I took prednisone for 12+ years for PMR alone. Prednisone never put PMR into remission. Being cured was never the goal.

I had prior experience with taking prednisone for other autoimmune conditions before PMR was diagnosed. Those other conditions were called "steroid responsive" and remission was achievable within a month or two. I could taper off prednisone quickly. PMR was different. I was never able to taper off prednisone after PMR was diagnosed.

A curious thing happened over time. The problem I had was my doctors rightfully got nervous about me taking prednisone for a long time. The focus of my rheumatology visits were less and less about PMR. My visits became more about how much prednisone was I taking and about how to get me off prednisone. The goal of "remission" and "tapering off prednisone" were one in the same goal. However, my ability to taper off prednisone became more elusive the longer I took prednisone.

My rheumatologist introduced me to "steroid sparing" medications. They were strictly used to get my prednisone dose lower. Prednisone was the "first line" treatment but apparently it needed reinforcements. I didn't do well when other medications were added to the mix.

Meanwhile, my GP was kept busy writing prescriptions for medications to control my BP and cholesterol. My weight seemed like a lost cause but my GP was good about "encouraging me" to lose weight. My GP also wrote referrals to other specialists for a never ending stream of new medical problems. It was never clear to me if prednisone, PMR or something else was causing all these other problems.

I don't think my problems were all age related but that was another possibility. I felt like I had aged rather suddenly. I would complain about feeling like I was 100 when I was only 60 years old and debilitated.

Happy ending though --- I'm off prednisone! I'm being treated with a different medication which works well for me. My rheumatologist had a hunch it would work for me. He said I was "too young" to take prednisone for the rest of my life. My rheumatologist wanted me to try something new and different and said there weren't many other options left. I was off prednisone a year later.

The possibility of remission now seems real to me. I feel like I'm recovering but I still have more to go. At least the gap between my actual age of 68 and how I feel is shrinking to something closer to 70. I hope to be better than I am now when I get to 70.

It is said that PMR will eventually "burn itself out." but the question that nobody can answer is "when."

Prednisone did a decent job at keeping my symptoms in check but I was never able to say "no pain." My rate the pain was a new normal average of a "5" -- some days better than other days.

Unfortunately, I relapsed whenever my prednisone dose was too low. Those setbacks were absolutely brutal and rated a "10." Those relapses only resembled my original PMR symptoms but I never could say symptoms were exactly the same as my original PMR symptoms.

I hope for everyone's sake that PMR burns itself out sooner than it did for me. I still don't know if remission will last. However, I seem to be doing much better being off prednisone.

I'm sure we all want to know what alternate medication you doc decided would work for you, if you are willing to share. We all have problems with steroids. Some, more than others. For myself, my glaucoma is limiting my pred use. (You should of heard my opthomologist's reaction to me being on sterorids!) It seems we are all in the same leaky boat.

What happened to me was that prednisone was started initially to "manage my symptoms." Unfortunately, prednisone wasn't all that effective at putting PMR quickly into remission. I took prednisone for 12+ years for PMR alone. Prednisone never put PMR into remission. Being cured was never the goal.

I had prior experience with taking prednisone for other autoimmune conditions before PMR was diagnosed. Those other conditions were called "steroid responsive" and remission was achievable within a month or two. I could taper off prednisone quickly. PMR was different. I was never able to taper off prednisone after PMR was diagnosed.

A curious thing happened over time. The problem I had was my doctors rightfully got nervous about me taking prednisone for a long time. The focus of my rheumatology visits were less and less about PMR. My visits became more about how much prednisone was I taking and about how to get me off prednisone. The goal of "remission" and "tapering off prednisone" were one in the same goal. However, my ability to taper off prednisone became more elusive the longer I took prednisone.

My rheumatologist introduced me to "steroid sparing" medications. They were strictly used to get my prednisone dose lower. Prednisone was the "first line" treatment but apparently it needed reinforcements. I didn't do well when other medications were added to the mix.

Meanwhile, my GP was kept busy writing prescriptions for medications to control my BP and cholesterol. My weight seemed like a lost cause but my GP was good about "encouraging me" to lose weight. My GP also wrote referrals to other specialists for a never ending stream of new medical problems. It was never clear to me if prednisone, PMR or something else was causing all these other problems.

I don't think my problems were all age related but that was another possibility. I felt like I had aged rather suddenly. I would complain about feeling like I was 100 when I was only 60 years old and debilitated.

Happy ending though --- I'm off prednisone! I'm being treated with a different medication which works well for me. My rheumatologist had a hunch it would work for me. He said I was "too young" to take prednisone for the rest of my life. My rheumatologist wanted me to try something new and different and said there weren't many other options left. I was off prednisone a year later.

The possibility of remission now seems real to me. I feel like I'm recovering but I still have more to go. At least the gap between my actual age of 68 and how I feel is shrinking to something closer to 70. I hope to be better than I am now when I get to 70.

It is said that PMR will eventually "burn itself out." but the question that nobody can answer is "when."

Prednisone did a decent job at keeping my symptoms in check but I was never able to say "no pain." My rate the pain was a new normal average of a "5" -- some days better than other days.

Unfortunately, I relapsed whenever my prednisone dose was too low. Those setbacks were absolutely brutal and rated a "10." Those relapses only resembled my original PMR symptoms but I never could say symptoms were exactly the same as my original PMR symptoms.

I hope for everyone's sake that PMR burns itself out sooner than it did for me. I still don't know if remission will last. However, I seem to be doing much better being off prednisone.

Hi,

I am new to this site and new to PMR, only diagnosed about seven weeks ago. While I got almost immediate relief from some cortisone shots in my hips and starting 15 mg. prednisone daily, I am now adjusting to what I call my "new normal".

Normal is not fun. Nor is is anything like what I thought treatment would bring. I have pain all the time, though nowhere as debilitating as it was - I was hardly able to walk and was crawling up/down stairs. Now I can move around, go to work, go for short walks (again, not the 3-4 mile walks I was taking!) and wondering what the future holds.

I am being treated by my PCP who is already talking about reducing my prednisone and I think I need a higher dose!!

The wait time to see a rheumatologist is months, even here in central NC, home to two major medical centers, so I must wait. Am taking tumeric, eating an anti-inflamatory diet, and looking for some encouragement that things will get better.

Any and all thoughts and suggestions will be appreciated. Thanks!

Susan