A month into my diagnosis with PMR

Posted by edinnola @edinnola, Sep 21, 2023

Hello everyone. I'm a 59 year old male diagnosed in mid August with PMR. I'm an active guy that played baseball (infield and pitches) twice a week. Im also a RN that walks almost 3-4 miles per shift. I last pitched June 11th, and by June 18th I could barely move. It started in both my hamstrings (which the doc said that they were both torn) and hips, and the pain moved to both my shoulders. Three MRIs, 3 ER visits, and a neuro team consult, plus orthopedic and GP appointments, and everyone was telling me that I'm just getting older and muscle tears happen from overuse at my age. It took almost 2 months of suffering with this before a friend, that's a teammate on my adult baseball team who happens to be a rheumatologist, diagnosed me because he heard I was having problems while he was out of town. I sent him a photo my MRI of my shoulders, and he called and asked what was going on? I told him, and he set up an appointment (New Orleans is where I live). He told me what I have, and he told me to look it up. Every freaking symptom that is listed I was experiencing. As a RN I'm not the best patient. I haven't worked since July because of the pain and not being able to move. I'm better than I was before steriods, but I'm not near where I was prior. Am I ever going to be able to move like previously before? The prednisone is insane...hunger and restlessness.
The photo is from the 1st day I was able to lift my arms over my head after starting the steroids.
My hips are and hamstrings are recovering but my shoulders.
I never heard of this as a nurse of 18 years of practice. Depression is no joke and not being able to lift a gallon of water at times is crazy.
Thank you for letting me vent. I'm not sure if I'm to the acceptance stage yet, I'm trying though.
I'm on 20mg a day and I take a delta-9 gummy to help with the sleep. It seems that 3 AM is a common time waking up from what I have read.
I'm just looking for answers and guidance.
I have just started Physical Therapy 2x a week too.

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

@edinnola That photo is really funny - I gauged how well i was doing in morning by the time it took to be able to put hair in a ponytail !! - I thought you might like to see the conversation i started when i first joined this group ! Cheers .

https://connect.mayoclinic.org/discussion/can-we-make-pmr-funny-can-we-fight-the-immune-cells-involved/?commentsorder=newest#chv4-comment-stream-header

ALso - you might like to read the way others described the pain and stiffness see attached

Shared files

impediment to living life pone (impediment-to-living-life-pone.0126758-1.pdf)

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@edwardh

If it started as a blister it likely is a spider bite, not a tick bite. Spider bites can cause some necrosis and take a long time to heal.
I had a tick bite this past July and sent the tick off to be tested, came back negative for the usual diseases but the bite is still red and itchy; I blame that on prednisone slowing my immune response. Just found another tick today and will send it off for testing. Having had a seriously debilitating co-infection with Lyme disease and Babesiosis 8 years ago I no longer take any chances when it comes to ticks.

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Ticks are a problem where we live. We are treating the area around the house with ecological granules to eliminate ticks etc. It's made by Jonathan Green. You need a stretch of good weather because rain will negate the effects. We treated the yard a couple times this summer.
If I were you, I would ask my Dr to order a Lyme test just to be sure I was not exposed to tick borne diseases.

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Thanks for the suggestion, pmrsuzie, I'll check out the Jonathan Green granules. Currently we put out tick tubes, cotton batten treated with permethrin, that the rodents use for bedding. At least it cuts down the number of ticks that make it past larval stage, though the deer are always around adding new adults every year. I have had Lyme disease and Babesiosis co-infection so know about the dangers and get a tick panel of tests whenever I have an encounter and show symptoms (and also send the tick in for testing). Those diseases aged me about 10 years according to my wife so I don't take any chances of a repeat.

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Had all the major vaccines this fall, one week apart (but I think the advice others have given of 2 weeks apart is a good idea). Nothing but a sore arm, so that is good. Bottom line, it seems anything can trigger the attack or flare. Vaccine or virus, doesn’t matter. So look at your risk factors and ability to tolerate one or the other. For me, I still work part-time in a hospital and am 3 weeks away from my son’s wedding. Keeping fingers crossed I don’t get sick and I’m willing to tolerate the painful mornings (a positive that I can still dress myself, which I couldn’t when it first hit) to keep from being sick and unable to attend the wedding.

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I hear you. RN as well-just retired. Active climbing dunes, paddle boarding, walking etc…basically one day went from age 60 to 90. I have had this for 1.5 yes now. Have never been pain free. Up and down on Pred. On Mtx. Just started Kevzara. I’m praying this will help. This is a good venue to know you are not alone.

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I hear you - I am an active 68 year old male - my PMR started this September in my hips and groin area then about a week later to my shoulders. I went to my doctor who prescribed Naproxen and Flexiril plus a blood test. My inflammation marker were up as expected but my hemoglobin was down ( we are still not sure why as a recent June blood test had it at excellent) well the naproxen and Flexiril helped - numbing the pain - sleep was almost impossible. I suffered through the term of that prescription and in my own research I went back to my Doctor to ask if it was PMR - he wasn’t convinced but put me on 10mg of Prednisone for 30 days - well 8 days in I called and told him it’s not working so he suggested I try 15 mg for a few days - there was a bit of improvement but still I could not put on a shirt or coat- I had to think about getting up from a sitting position. So he was without an answer - he ordered more blood tests - and put me at 50mg a day . Today is day one - I can finally put a coat on and raise my arms above my head. It took 4 hours to kick in. I read that every person reacts to prednisone differently- my dose is considered high - I don’t know if I will sleep tonight? But I hope so. Tomorrow will be another day - hopefully pain free for the first time since September.
But yes anyone reading this PMR effects people differently some more severe than others- my hope with my high dose that my bout with burn itself out within a year, though I know it can last six years. Cheer

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@jixster

I hear you - I am an active 68 year old male - my PMR started this September in my hips and groin area then about a week later to my shoulders. I went to my doctor who prescribed Naproxen and Flexiril plus a blood test. My inflammation marker were up as expected but my hemoglobin was down ( we are still not sure why as a recent June blood test had it at excellent) well the naproxen and Flexiril helped - numbing the pain - sleep was almost impossible. I suffered through the term of that prescription and in my own research I went back to my Doctor to ask if it was PMR - he wasn’t convinced but put me on 10mg of Prednisone for 30 days - well 8 days in I called and told him it’s not working so he suggested I try 15 mg for a few days - there was a bit of improvement but still I could not put on a shirt or coat- I had to think about getting up from a sitting position. So he was without an answer - he ordered more blood tests - and put me at 50mg a day . Today is day one - I can finally put a coat on and raise my arms above my head. It took 4 hours to kick in. I read that every person reacts to prednisone differently- my dose is considered high - I don’t know if I will sleep tonight? But I hope so. Tomorrow will be another day - hopefully pain free for the first time since September.
But yes anyone reading this PMR effects people differently some more severe than others- my hope with my high dose that my bout with burn itself out within a year, though I know it can last six years. Cheer

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If my case was any indication, PMR can last longer than 6 years ... more like 12 years for me. The majority of people are able to taper off prednisone in 1-2 years. There are a significant number of people who take prednisone for a longer period of time.

I actually lost hope that I would ever be able to taper off prednisone. Some people argued that it was all about quality of life and I should continue taking prednisone.

I would encourage people to taper off prednisone as soon as they can. My "long term" treatment didn't improve my quality of life. It was one "prednisone related" medical complication after another after my first couple of years of treatment with prednisone.

I fit into the profile described in the following link.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4844628/

Furthermore, tocilizumab therapy was tried after 12 years of PMR and I was off prednisone a year later. I'm still doing tocilizumab infusions every 4 weeks.

PMR seems to be in remission. Many of my prednisone related complications have resolved or improved given how many other medications I have been able to stop taking.

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