1. < Polymyalgia Rheumatica (PMR)

How long has PMR lasted - I'm trying to find the average

Posted by shannaam @shannaam, Apr 16, 2022

I've had PMR for just over a year now and I'm trying to reduce the Prednisone as I hate taking pharmaceuticals. Just wondering how long I'm going to have to put up with it! My doctor has said very little as they don't seem to know why people get only to take Prednisone to ease the pain. Also that it can last between 1 & 5 years! Just trying to find out from people who have it or had it - to get an average.

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ddmo | @ddmo | Oct 15, 2022
In reply to @microbe1943 "I just responded to someone who asked how long some of us have had PMR. But,..." + (show)
@microbe1943

I just responded to someone who asked how long some of us have had PMR. But, now, I need to respond here too! I am positive my PMR came after the 2nd Moderna shot. After I found my way to a Rheumatologist 4 months later I was told I had PMR and started on Prednisone. 2 months later I was in my PCP office for a check up. I had been in the hospital for a round of serious divverticulitis and treated for it (while on the steroid so my immune system was down). 18 days of IV antibiotics and I was in for an outpatient follow up. My doctor said did I want a flu shot. I NEVER get them but decided I felt so vulnerable after the PMR and quick and serious infection that maybe I didn't want the flu. MISTAKE!!!!! I got the quadravalent flu shot for Seniors. I was sick for 3 days with fevers and fatigue and felt generally awful. Then I started having night sweats drenching the bed and clothes, then shivering chills. I had a fever of up to 101 for 10 days. My sed rate and crp and wbc were all up. Back to the hospital. No one sure what was up. Fast forward. In December I was with my kids in CT as I was seeing my oncologist who treated my pancreatic cancer in 2016 (I was given 2 months to live and I am alive and well from that 6 years lagter!!!). He is a great diagnositition and so many things were OFF iun my blood work with my sed rate greater than 130 that I flew from cA to CT to see him. I was there 6 months. Covid was raging then. I was with grandkids in their home...they were getting it and being sequestered. So I got the booster. OMG. Mistake. I did not get Covid...but the vax's (all of them) I am sure sent me down this hell river. I am good now after 19 months and on 2 mg Medrol. SED rate and cRP normal now. So, the moral of this story...is YES THE VACCINES AND FLU SHOTS for some of us are a disaster. NEver again for me. Microbe1943

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sorry to hear ur story but definitely agree! it's a balancing act to determine what decision to make to stay healthy these daze... crazy times in this crazy world. Glad ur doing better.
ddmo

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1 reply
microbe1943 | @microbe1943 | Oct 15, 2022
In reply to @ddmo "sorry to hear ur story but definitely agree! it's a balancing act to determine what decision..." + (show)
@ddmo

sorry to hear ur story but definitely agree! it's a balancing act to determine what decision to make to stay healthy these daze... crazy times in this crazy world. Glad ur doing better.
ddmo

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Thank you!

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1 reply
tricialynn | @tricialynn | Oct 15, 2022
In reply to @shafer1990 "Husband diagnosed June 2017 and continues to battle PMR to this day. He has gotten as..." + (show)
@shafer1990

Husband diagnosed June 2017 and continues to battle PMR to this day. He has gotten as low as 7mg and is back up to 20mg after having a total knee replacement.
I am finding stress has a major impact on his flare ups.
Good luck!

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I am curious to know if your husband had knee problems before he was diagnosed with PMR or did he develop knee problems after he started taking prednisone. I’ve been on prednisone for 2 years and in the last year have developed calf stiffness and achy knees. Walking has become difficult yet I have no problems sitting or sleeping. Does PMR contribute to arthritic problems?

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ddmo | @ddmo | Oct 15, 2022
In reply to @microbe1943 "Thank you!" + (show)
@microbe1943

Thank you!

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sometimes "grandchildren" are the best med.

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adia | @adia | Oct 16, 2022
In reply to @microbe1943 "I just responded to someone who asked how long some of us have had PMR. But,..." + (show)
@microbe1943

I just responded to someone who asked how long some of us have had PMR. But, now, I need to respond here too! I am positive my PMR came after the 2nd Moderna shot. After I found my way to a Rheumatologist 4 months later I was told I had PMR and started on Prednisone. 2 months later I was in my PCP office for a check up. I had been in the hospital for a round of serious divverticulitis and treated for it (while on the steroid so my immune system was down). 18 days of IV antibiotics and I was in for an outpatient follow up. My doctor said did I want a flu shot. I NEVER get them but decided I felt so vulnerable after the PMR and quick and serious infection that maybe I didn't want the flu. MISTAKE!!!!! I got the quadravalent flu shot for Seniors. I was sick for 3 days with fevers and fatigue and felt generally awful. Then I started having night sweats drenching the bed and clothes, then shivering chills. I had a fever of up to 101 for 10 days. My sed rate and crp and wbc were all up. Back to the hospital. No one sure what was up. Fast forward. In December I was with my kids in CT as I was seeing my oncologist who treated my pancreatic cancer in 2016 (I was given 2 months to live and I am alive and well from that 6 years lagter!!!). He is a great diagnositition and so many things were OFF iun my blood work with my sed rate greater than 130 that I flew from cA to CT to see him. I was there 6 months. Covid was raging then. I was with grandkids in their home...they were getting it and being sequestered. So I got the booster. OMG. Mistake. I did not get Covid...but the vax's (all of them) I am sure sent me down this hell river. I am good now after 19 months and on 2 mg Medrol. SED rate and cRP normal now. So, the moral of this story...is YES THE VACCINES AND FLU SHOTS for some of us are a disaster. NEver again for me. Microbe1943

Jump to this post

I believe with relative certainty that my PMR diagnosis was from several conditions colliding within. I truly believe it started in my gut. Some imbalance and I had a sudden flare of diverticulitis. I had ongoing stress about selling my home and not knowing where to move, so I backed out of sale at the last minute. The trifecta was I got PMR 2 months after my 4 th shot (the 2nd booster). I don’t want to be on prednisone for months and months, so I am looking at diet transformation.

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threadsandbows | @threadsandbows | Oct 16, 2022

I am 69 and was diagnosed with PMR about 5 years ago. It lasted about 2 1/2 years and been in remission ever since. I did develop cataracts in both eyes and gained a few pounds. I wasn’t very I’ll, just in pain which the prednisone helped in a relatively short time, just a couple of months. I am grateful to be in remission.

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deejayc | @deejayc | Nov 2, 2023

I started to lessen my dose of prednisone after the 1st month. 1 Mg per month. Altogether it took 11 months and after I finished I was really stiff for about 2 months but my rheumy assured me it was over. I haven’t had anything since but prednisone is hard on the body and I have shoulder issues that I think are from the prednisone.

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1 reply
DadCue | @dadcue | Nov 2, 2023
In reply to @lmoross "I was told by a doctor at the University of Iowa 1-4 years average. But others..." + (show)
@lmoross

I was told by a doctor at the University of Iowa 1-4 years average.
But others have told me they don’t know, just like the cause and why it disappears. I am starting year five. So tired of prednisone and the side effects. Have tried methotrexate and other drugs to no avail. Starting Actemra infusions now as my rheumatologist thinks I may also have seronegative RA. I think she may be running out of treatment options. I fear this may be my future life. Anyone else have horrible attacks of sweating from prednisone?
Thank you and best wishes.

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I was treated by a rheumatologist, an ophthalmologist and a primary care doctor at the University of Iowa for about 15 years. I also had numerous referrals to other specialists.

I was happy with the care I received. My doctors responded to every inquiry and I never felt like I was fending for myself. I think they were running out of treatment options for me as well.

When I retired, I switched over to the VA in Iowa City. There was continuity of care because doctors at the University are also staff doctors at the VA. The rheumatologist at the VA knew all about me at my first visit and was able to offer Actemra to me.

I also tried MTX and other drugs to no avail. Seronegative RA was on my problem list in addition to PMR There were other medical problems that weren't autoimmune related along with complications from long term prednisone use.

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hunib33 | @hunib33 | Nov 3, 2023

I was diagnosed with PMR in Feb of this year (2023) and I’m now on 1/2 mg for the rest of this month (Nov), then I will have completed this regimen. My SED rate was tested Oct. 30th and it was 10. There are mild aches now and then, but they will pass over time. Overall I feel really good.

I think a lot depends on how intense your initial symptoms are as it relates to your initial prednisone dosage. I’ve noticed most people on this site start at 20 mg. My doctor punched PMR in the mouth with an initial dosage of 60 mg for 4 days; then 40/4 days; 30/4 days then 20 for 10 days. I started tapering from there. I was an avid exercise enthusiast before PMR and gradually added exercise back in. I followed my doctor’s directions to the letter and it has worked for me. I’ll be 79 later this month.

I’ve read the average length of this condition is 12 months, but cases vary widely. A lot of people on this site are seeing a rheumatologist. My internist treated me.

Remain positive and this too shall pass ☺️

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1 reply
nyxygirl | @nyxygirl | Nov 3, 2023

Hello @shannaam -- in regard to your comment below
"My doctor has said very little as they don't seem to know why people get only to take Prednisone to ease the pain. "
When you say Doctor - do you mean Rheumatologist ?
where do you live ? in USA an anti-IL6-receptor drug KEVZARA ( sarilumab) was approved in early 2023 -- there are a few conversations in this patient connect with PMR patients who are taking Kevzara . Please look at this web site with interesting slide shows and videos https://www.pmrandil6.com/.

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