PMR Remission

Posted by christopherc @christopherc, Nov 15, 2023

I’m a 68 year old male with PMR for almost three years now. I’m finishing up my second course of prednisone and I am feeling pretty good but still have the stiffness and pain to a lesser degree.

If anyone has experienced PMR remission did you feel it slowly but surely or did the disease go away more suddenly? And once in “remission “ were you completely symptom free or did you continue to have times or days where you felt like it was rearing its ugly head again?

Thanks for any insights you may have.

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Remission isn't well defined for PMR. Some speak of remission as being the relief of symptoms while still being treated with prednisone. Others say remission occurs when you are able to taper off prednisone. Some say you were never in remission if you taper off prednisone but have a relapse.

I have been off prednisone for 3 years but I'm still being treated with a biologic that isn't prednisone. I don't know if I qualify as being in remission. My rheumatologist noted that I might be in remission after 12 years of PMR treated with prednisone.

If I'm in remission, I definitely wouldn't say I was suddenly symptom free after tapering off prednisone. There was a "hangover effect" from long term prednisone use called adrenal insufficiency. Adrenal insufficiency can last months or years after slowly tapering off prednisone and can contribute to muscle/joint pain.

PMR inflammation is said to not cause any bodily damage. If knee replacements with "aberrant healing" along with a "spontaneous" tendon rupture and other weird things aren't damage then I don't know what is. I also have significant lower back pain and nerve damage so that hurts too. Not to mention degenerative arthritis due to aging that is hard to avoid as we age.

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@dadcue

Remission isn't well defined for PMR. Some speak of remission as being the relief of symptoms while still being treated with prednisone. Others say remission occurs when you are able to taper off prednisone. Some say you were never in remission if you taper off prednisone but have a relapse.

I have been off prednisone for 3 years but I'm still being treated with a biologic that isn't prednisone. I don't know if I qualify as being in remission. My rheumatologist noted that I might be in remission after 12 years of PMR treated with prednisone.

If I'm in remission, I definitely wouldn't say I was suddenly symptom free after tapering off prednisone. There was a "hangover effect" from long term prednisone use called adrenal insufficiency. Adrenal insufficiency can last months or years after slowly tapering off prednisone and can contribute to muscle/joint pain.

PMR inflammation is said to not cause any bodily damage. If knee replacements with "aberrant healing" along with a "spontaneous" tendon rupture and other weird things aren't damage then I don't know what is. I also have significant lower back pain and nerve damage so that hurts too. Not to mention degenerative arthritis due to aging that is hard to avoid as we age.

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Thanks for your thoughtful response. I’m sorry you’ve had such a rough time with PMR and other ailments. It sounds like PMR and long term use of prednisone have had many detrimental effects for you. I wish you well with recovery from your injuries and the ability to minimize the effects of chronic diseases on your life.

I feel sometime like PMR remission is a vanishing horizon or like Charlie Brown when Lucy repeatedly pulls the football away. But there is always hope.

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@christopherc, My first time with PMR lasted 3-1/2 years until I could taper off of prednisone. It came back 6 years later and I was able to taper off of prednisone in 1-1/2 years. I've been in what I consider remission for almost 6 years again and I'm hoping the overwhelming pain that I associated with PMR never darkens the doors again. I still wake up with stiffness and some body aches every morning but I expect that since I'm 80 and have degenerative arthritis and lower back issues. I still try to get in 30 to 45 minutes a day exercise on my recumbent cross trainer exercise bike and try to keep up with the yard work and snow removal when the time comes.

To me, staying as active as possible has helped with the stiffness. I just try not to overdo the exercising to make the joints worse. There have been days when I think the PMR might be back due to shoulder joint pain but it's really nothing like my two occurrences of PMR in intensity so I chalk it up to other things and slap a little arthritis cream or Voltaren gel on it for some relief.

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@johnbishop

@christopherc, My first time with PMR lasted 3-1/2 years until I could taper off of prednisone. It came back 6 years later and I was able to taper off of prednisone in 1-1/2 years. I've been in what I consider remission for almost 6 years again and I'm hoping the overwhelming pain that I associated with PMR never darkens the doors again. I still wake up with stiffness and some body aches every morning but I expect that since I'm 80 and have degenerative arthritis and lower back issues. I still try to get in 30 to 45 minutes a day exercise on my recumbent cross trainer exercise bike and try to keep up with the yard work and snow removal when the time comes.

To me, staying as active as possible has helped with the stiffness. I just try not to overdo the exercising to make the joints worse. There have been days when I think the PMR might be back due to shoulder joint pain but it's really nothing like my two occurrences of PMR in intensity so I chalk it up to other things and slap a little arthritis cream or Voltaren gel on it for some relief.

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Thanks, John.

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@christopherc

Thanks for your thoughtful response. I’m sorry you’ve had such a rough time with PMR and other ailments. It sounds like PMR and long term use of prednisone have had many detrimental effects for you. I wish you well with recovery from your injuries and the ability to minimize the effects of chronic diseases on your life.

I feel sometime like PMR remission is a vanishing horizon or like Charlie Brown when Lucy repeatedly pulls the football away. But there is always hope.

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There is always hope for the future. I think my biggest problem with PMR was that I tended to dwell too much in the past. There was a monumental change that occurred when I was offered the biologic 4 years ago. I'm so happy my rheumatologist decided I was "too young" and "too healthy" to take prednisone for the rest of my life. I give my rheumatologist credit for that outlook on my life but, at the time, I thought he had me confused with someone else.

I just had a visit with my primary care doctor. We discussed my past pertaining to my "prednisone days." I kept saying most everything wasn't a problem anymore. I kept separating my past from how I feel in the present.

My primary care doctor said I was the "healthiest" patient he had seen all day. I think my primary care doctor was being honest and not sarcastic from a "health maintenance" point of view. My primary care doctor referred my questions about my more challenging problems to my other specialists.

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@dadcue

There is always hope for the future. I think my biggest problem with PMR was that I tended to dwell too much in the past. There was a monumental change that occurred when I was offered the biologic 4 years ago. I'm so happy my rheumatologist decided I was "too young" and "too healthy" to take prednisone for the rest of my life. I give my rheumatologist credit for that outlook on my life but, at the time, I thought he had me confused with someone else.

I just had a visit with my primary care doctor. We discussed my past pertaining to my "prednisone days." I kept saying most everything wasn't a problem anymore. I kept separating my past from how I feel in the present.

My primary care doctor said I was the "healthiest" patient he had seen all day. I think my primary care doctor was being honest and not sarcastic from a "health maintenance" point of view. My primary care doctor referred my questions about my more challenging problems to my other specialists.

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I’m glad you have helpful doctors and are happy with your care. Best to you and keep the faith.

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Everyone is different of course in how PMR affects them and the course of treatment they choose. I woke up one morning with pain, stiffness and muscle weakness in lower extremities and neck. When I was diagnosed, I decided to opt for aquatic exercise and anti-inflammatory diet. No steroids. I did this for about a year. Lost considerable weight and gradually saw my muscles regain strength. Then, woke up one morning and suddenly as before the pain was gone except for the neck which took awhile longer. That was about two years ago. My Sed and ESR gradually went down as well. It was a gamble but one I was willing to take. I am in my 70's.

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@pacarolyn

Everyone is different of course in how PMR affects them and the course of treatment they choose. I woke up one morning with pain, stiffness and muscle weakness in lower extremities and neck. When I was diagnosed, I decided to opt for aquatic exercise and anti-inflammatory diet. No steroids. I did this for about a year. Lost considerable weight and gradually saw my muscles regain strength. Then, woke up one morning and suddenly as before the pain was gone except for the neck which took awhile longer. That was about two years ago. My Sed and ESR gradually went down as well. It was a gamble but one I was willing to take. I am in my 70's.

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Thanks for this response about your experience. It is encouraging. I have recently adopted a lower carb less, inflammatory diet and i am hoping it will help and bring remission sooner than otherwise.

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I began my PMR journey if u will, in Aug. I began prednisone 20 mg and immediately felt much better. Remained on that for one month then went down to 15 for another month, then to 10 mg 4 weeks at which I went to 5 mg. The first 5/6 days I felt a bit achy and tired but it has slowly gotten better. I did see my rheumatologist and had elevated crp blood test 5 days in on 5 mg. I’m a 67 year old female. It’s taken 10 days to feel fairly normal on 5 mg. Having knee replacement on dec 14 so I want to stay at this dose. My orthopedic surgeon is ok with 5 mg. But ultimately I want to wean off totally, yet I don’t want any flares. That’s my story to date lol, as we all know everyone is different and reacts uniquely but it does help me to hear others stories and experiences.

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@katejaha

I began my PMR journey if u will, in Aug. I began prednisone 20 mg and immediately felt much better. Remained on that for one month then went down to 15 for another month, then to 10 mg 4 weeks at which I went to 5 mg. The first 5/6 days I felt a bit achy and tired but it has slowly gotten better. I did see my rheumatologist and had elevated crp blood test 5 days in on 5 mg. I’m a 67 year old female. It’s taken 10 days to feel fairly normal on 5 mg. Having knee replacement on dec 14 so I want to stay at this dose. My orthopedic surgeon is ok with 5 mg. But ultimately I want to wean off totally, yet I don’t want any flares. That’s my story to date lol, as we all know everyone is different and reacts uniquely but it does help me to hear others stories and experiences.

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remission lasted almost 2 years, then gradually returned. It started subtlety , now is full blown ,
My GP is not convinced its PMR, Will now seek another Rheumatologist
Pain in AM is debilitating, gradually lessens In PM

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