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Intimations of life after PMR
In addition to PMR I have allergic contact dermatitis, and the allergen is formaldehyde, which is everywhere. The itching and rashes grew so troublesome that I took a 20mg dose of prednisalone to mitigate them, as I had done before contracting PMR in 2022. When I arose the next day I was shocked to find that I had no symptoms at all of PMR. I had tapered over 3 1/2 years from 20 to 0.5mg of prednisone, all the while experiencing mild stiffness on arising and a few other symptoms that didn't alter my way of life. But that morning I was free! The wonderful thing, more than the freedom from minor PMR symptoms, was the psychological boost that came with that freedom. Now it is four days later, and the PMR has come back a bit, but I can bear it happily, knowing what (I hope) lies ahead when the disease retreats. The experience has taught me a good deal about our nasty disorder.
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Hi, I have read afew of your posts and always good to see an update your progress and what you have tried to assist with this illness. It does sound like it's retreated enormously in the last two yours. So hope for us all.
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1 ReactionThanks, gmdb. It is a long and nasty road for us, but it does get easier as we travel. I have very slowly and safely tapered to 1/2 mg day but it ain't over!
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1 ReactionI was started on 15mg prednisone for inflammation and it worked for 2 days before the pain came back. I was then put on 25mg for a PMR diagnosis and my hip girdle pain disappeared and my neck and shoulder pain went down to mild discomfort. Subsequently I was diagnosed with SMM. Now I'm tapering down on prednisone. I started 10mg today. I keep being surprised by a new pain somewhere that I didn't realize was being suppressed by the prednisone. My shoulder pain is beyond mild but still tolerable and my hip girdle pain is returning but still mostly mild. I've done the blood work for kevzara and I'm waiting for the results and insurance approval. Some days I wish I could just stay on the prednisone, but it's no longer an option.
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2 ReactionsOne thing that I find astonishing about PMR is that it isn't likely to kill us. I'm not so sure about the treatment of PMR with prednisone.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12278481/
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I remember when I tapered off prednisone. I didn't celebrate being "symptom free" or "pain free." I only celebrated that I was prednisone free. I completely agree that there was a huge psychological boost that came with freedom from prednisone.
PMR taught me a valuable lesson. Since I survived the worst of times ... I find it easier to believe that better times are still ahead of me. That is an outlook on life that can be powerful.
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4 Reactions@pkalkstein I am currently at 1.5 mg prednisone going down to 1 mg for 14 days then 0.5 mg for 14 days. I pray every day that I will be off prednisone by end July. However, I do have a pain level 5/10 left shoulder but I think it is mechanical even though i have pain in wrists/hands. I am starting to feel low grade pain right shoulder and hip. I have functionality and range of motion after the first few days of taking prednisone January 23. I try not to think about what damage prednisone has caused. Both the disease and prednisone are horrible. Wish me luck that I will be off shortly.
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2 Reactions@dswilson913
They say PMR doesn't do any lasting damage in spite of the chronic inflammation. I found that hard to believe while I was bombarded with warnings of all the damage that long term prednisone can do.
I remember when my shoulders hurt so much that I told a physical therapist that nothing can hurt that much without doing some serious damage.
"Unlike other forms of joint inflammatory conditions, PMR does not cause progressive or permanent damage or disability to the muscles and joints."
https://www.arthritis-health.com/types/polymyalgia-rheumatica/what-polymyalgia-rheumatica.
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And ...
"It can cause inflammation and swelling of the joints, muscles and surrounding soft tissues (i.e. bursa). Thankfully, PMR does not cause permanent joint damage."
https://myfamilyphysio.com.au/polymyalgia-rheumatica/
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Personally, I seem to have a lot of residual arthritic damage. Maybe I didn't have PMR after all OR maybe it was all of the prednisone. I remember when a tendon ruptured spontaneously and that was blamed on all of the prednisone I took. My shoulders don't seem to be damaged at all. All of my damage is in my lumbar spine, and legs with some minor damage to my feet and hands. More than likely ... it was a combination of PMR with inflammatory arthritis as my rheumatologist said at the start of PMR. This was reaffirmed later by another rheumatologist who simply said I had a "full range of rheumatic conditions" and multiple autoimmune conditions.
Stay strong and I also pray that you are off prednisone by July.
@dadcue Thank you.
@dswilson913 You seem to be tapering pretty darn fast. Prednisone attacked my tendons a couple of years ago and one of my achilles tendons is not right. Sadly we don't have much choice but to carry on and hope it will end. Good luck to you!
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1 Reaction@dadcue
Mike, I read your posts often and appreciate your insights and experience. I am overwhelmed with your journey; 12 years on pred, whew!
I was happily rocking along on my 10mg after PMR dx. Oct.2025. Then GCA came along. My pcp increased to 40mg. I had a rt. temporal artery biopsy confirming the diagnosis. Three days later my first rheumy visit was March 12th. She started me with Actemra infusion, keeping me on pred, of course. I switched to weekly Tyenne selfinjections one month later. That kept me from driving 1hr.each way and insurance would only cover Tyenne for self injections. It covered the Actemra infusions 100%. Go figure.....
Anyway, my rheumy has decreased pred to 30 then 20 in April,
10mg May and 5mg this month. I will be tapering 1mg per month going forward IF no flares. She says it can take 1-2+ years for some to go into remission. At least, hopefully, I'll be off the pred.
The different treatment approaches and recommendations I read that different docs take indicates to me that PMR and GCA have no standard of care. As you say, everyone is different and these autoimmune diseases can be vicious.
I pray for all of you on this forum. Yes, it takes alot of "hanging in there".
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1 Reaction@dadcue yes, indeed, if they ever actually uncover the causes for many of these illnesses, I suspect they'll find that the current diagnostic "boxes" they put us in don't actually mean much. The boxes sometimes make it easier to treat the symptoms, and at other times they don't. Given, of course, that they are unable to treat what is actually wrong.