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.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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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@martiesowers

I was diagnosed May, 2021 - had already had it since December - am in the process of being well now July, 2022. I m down to 2mg methyprednisolone every other day, 10cc methotrxtrate injtion weekly and 2 injections of Kevzara each month.

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Does your insurance pay for Kevzara? I was told by a doctor at the University of Iowa about it in 2019, as there was a trial going on there with the drug. I didn’t qualify for the trial at the time as my inflammation numbers declined when on 7.5 mg of prednisone. He told me the drug would be free during the trial, but very expensive if not enrolled.

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I am getting the Kevzra for no charge. The initial quote was $4000.00 a month which I could not afford. there was a program the doctor knew about and I qualified.

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I just read in some research article that PMR typically lasts from one to five years. I would like to hear from others about how long they have had PMR and if it just gradually went away...

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@christi48

I just read in some research article that PMR typically lasts from one to five years. I would like to hear from others about how long they have had PMR and if it just gradually went away...

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Hi @christi48, We moved your post to an existing discussion on the same topic started by @shannaam here:
-- How long has PMR lasted - I'm trying to find the average: https://connect.mayoclinic.org/discussion/how-long-has-pmr-lasted-im-trying-to-find-the-average/

It's a question a lot of us have had when we were trying to figure out how long this awful condition is going to last. My first occurrence of PMR lasted 3 and half years and then went into remission for 6 years before it flared up again. The second time around the PMR lasted a year and a half and was a little easier to manage due to some lifestyle changes I made after the first occurrence - eating healthier and more exercise.

I noticed in one of your earlier posts that you were diagnosed with PMR several months after a COVID vaccine. How long has your PMR been active? How is the tapering off of prednisone going?

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Having had PMR twice, did you experience any long-term side effects from the prednisone if you took it? Did they go away after you got off the pred?

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@vandyms1974

Having had PMR twice, did you experience any long-term side effects from the prednisone if you took it? Did they go away after you got off the pred?

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The only side effect I had from prednisone was a large weight gain the first time with PMR. The second time I was more aware and changed some bad eating habits along with some exercise and was able to keep the weight gain to around 5 pounds.

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For me 18 months from start of pain. Not diagnosed for 4 months. STarted prednisone August 2020. I am almost off the steroids. down to 2 mg and inflammatory markers finally normal. Microbe1943

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I was diagnosed with PMR a year and a half ago. I have been tapering the Pred but at 1mg I had a horrible issue with pain in both thighs, pressure on low part of skull and fatigue. I increased to 3mg (have dr.'s appt next week) and feel much better. not great but better.
I feel PMR is a result of my initial covid vaccine and follow up boosters. I am reluctant to get the "new" booster.
My internist was surprised to see an increase in PMR diagnoses at the same time I was diagnosed.

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@ddmo

I was diagnosed with PMR a year and a half ago. I have been tapering the Pred but at 1mg I had a horrible issue with pain in both thighs, pressure on low part of skull and fatigue. I increased to 3mg (have dr.'s appt next week) and feel much better. not great but better.
I feel PMR is a result of my initial covid vaccine and follow up boosters. I am reluctant to get the "new" booster.
My internist was surprised to see an increase in PMR diagnoses at the same time I was diagnosed.

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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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