Does PMR go away permanently?

Posted by pawprintpeg @pawprintpeg, Jun 25 6:51am

I’m newly prednisone free and oh boy I am sore and miserable but I think I can do this. I sole-speak to myself constantly saying, “Come on body let’s reset”!! Now I’m reading it doesn’t go away but only goes into remission. 😭

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

msmtred13 | @msmtred13 | Sep 3 11:11pm

In reply to @kjoed53 "@msmtred13 If you have a GP, why can't they treat you? If they won't, then maybe..." + (show)

@kjoed53 the GPs take care of the basics and they refer everything else out to specialists. However, she did step in and put me on Prednisone to get me started.

Rosette | @e441300 | Sep 4 5:21am

In reply to @slh317 "@carolneedham I had PMR 6 years ago and went to the Rheumatology department at UAB. They..." + (show)

That's wonderful @slh317 ! How old were you when you were first diagnosed?

kjoed53 | @kjoed53 | Sep 4 6:07am

In reply to @msmtred13 "@kjoed53 the GPs take care of the basics and they refer everything else out to specialists...." + (show)

@msmtred13
I don't understand then why in three years could you not get a rheumatologist appointment? There's a piece missing from your story.

p00lman49 | @p00lman49 | Sep 4 8:25am

My GP made the referral to a Rhuematologist group and I was seen within a couple of weeks, I was already on Prednisone from my initial visit to a emergency Clinic referred to by a GP. After two years of blood tests and the Rheumatologist PA not really doing or recommending anything proactive,or even reading the blood tests until I made my biweekly visit , I changed rheumatologists with a referral from my new GP. The GP also sent me to a cancer specialist whose PA read my blood test and diagnosed me having Chronic Lymphatic Leukemia. The new Rheumatologist agreed and got me on an aggressive tapering off Prednisone. Witnin two months I was off., from 5 to 0; and I had two Iron infusions from the Cancer center immediately after.. My markers improved dramatically one month after the infusions and I felt very good. So I thought PMR and CLL seemed to be in my rear view mirror for 6 months. In that time I had a lower back surgery to replace faulty hardware and as I was recovering 4 months later in PT I had a couple of falls. In one fall on Fathers Day I ruptured my quad. Falls were determined to be caused by a faulty nee replacement (2021) so I had a knee revision July 2.. The knee revision surgery went great. But during the ensuing 2 month recovery my lower back started acting up in the buttocks. So I went back to the Cancer specialist thinking the CLL returned only to find out my CLL markers were still improved . He declared I have no CLL nad it is not a contributing factor to my buttocks pain. I do know when I had the knee revision surgery in early July they gave me a lot of prednisone in surgery. When I woke up in the hospital I felt great, no pain anywhere, Knee was painless, etc. I felt tht way for 3-4 days afterwards. Then the lower back/buttocks pain started. So I am thinking PMR may have returned or my back surgery was not as effetive as hoped. I awaiting some bloodwork results to see where my SED rate is standing since my CLL markers ae not prevalent now. Geez, what a journey.

slh317 | @slh317 | Sep 4 8:48am

In reply to @e441300 "That's wonderful @slh317 ! How old were you when you were first diagnosed?" + (show)

@e441300 I was 69 when diagnosed and finished with the prednisone taper when I was 70.

slh317 | @slh317 | Sep 4 9:00am

In reply to @p00lman49 "My GP made the referral to a Rhuematologist group and I was seen within a couple..." + (show)

@p00lman49

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@p00lman49 after my knee replacement surgery I also had back/SI joint and buttocks pain. Fortunately it got better after a month or two. My back had to get used to walking straight again after walking a little crooked for so many years due to my bad knee. I also went to an orthotic specialist who took molds of my feet and custom made inserts for my sneakers. I wear them all the time as they improved my balance, gait and posture. I have not had any SI joint issues since. That said, your issues are more complicated so I wish you well in finding some solutions.

msmtred13 | @msmtred13 | Sep 4 11:38am

In reply to @kjoed53 "@msmtred13 I don't understand then why in three years could you not get a rheumatologist appointment?..." + (show)

@kjoed53 there is only one rheumatologist and his PA in our metropolitan area of 96,000. With our aging population there is a strong need for many more.

wendypics | @wendypics | Sep 4 12:08pm

I'm so grateful for everyone who shares here. I wrote about my "journey" a few weeks ago, Then I started on 10mg prednisone and felt great! had a wonderful vacation at the ocean.. restful and nurturing. A week later went to see grandkids. Not restful, but fun. Started talking to my doc about tapering, and then two days ago, out of the blue my hip ached so bad I could hardly stand up. Thought I must have "done" something, but 3 days into this I realized its the PMR. Same awful pain... not letting up. I told my doc I'm not gonna start the taper yet... hoping this will resolve soon. But don't want to up the prednisone either. It's so upsetting, really messes up your life, but now I'm back to rest, gratitude, meditation, qi gong and other movement that doesn't hurt.

Again, I appreciate what you all share. Now I know I'm not crazy when the pain moves around, and I'm inspired by those of you who also soul-talk and keep a steel spine. Blessings and healing to all of you.. and thanks for letting me vent.

kjoed53 | @kjoed53 | Sep 4 12:52pm

In reply to @msmtred13 "@kjoed53 there is only one rheumatologist and his PA in our metropolitan area of 96,000. With..." + (show)

@msmtred13
I'm sorry to hear that, but PMR is not something I suggest doing on your own. Is there a different primary care doctor or geriatrician who can handle PMR in your area? Maybe virtual visits with a rheumatologist located a little further away?

Mike | @dadcue | Sep 4 1:00pm

In reply to @p00lman49 "My GP made the referral to a Rhuematologist group and I was seen within a couple..." + (show)

@p00lman49

Jump to this post

@p00lman49

Life can sure get complicated when we have immune system dysfunction. I don't have CLL but I was recently diagnosed with another type of cancer. I'm trying to understand how my immune system is interconnected with various other systems because I have a neuro-endocrine tumor (NET). I had an early start learning about the endocrine system because of Prednisone induced adrenal insufficiency. Now I have learned NETs are also associated with elevated IL-6 levels which is the cytokine associated with PMR.
https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132
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I don't know anything about CLL but it might have an effect on autoimmune disorders.
https://www.oncologynurseadvisor.com/news/recognizing-autoimmune-disease-in-patients-with-chronic-lymphocytic-leukemia/