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Advice/experience about going back on Prednisone
I was diagnosed with PMR in December 2022. I did a short course of prednisone (3 weeks?) if I recall correctly and it helped, but it did not go away. I was referred to a rheumatologist but couldn't get an appointment until Sep. 2023. It got slowly better over that time. Rheumatologist put me on a short course again (10mg for a couple of weeks) and started working at another facility. Today (four months later) the new rheumatologist wants to put me on an extended regimen of 3 weeks each of 10mg, 9mg, 8mg, .... down to 1mg I guess. The pain now is completely livable. I have to be careful putting a shirt or jacket on and turning over in bed at night. Riding a bike requires periodic breaks, but I can ride and lift weights as I like more or less. I have been thinking it might be getting slightly worse and my ESR has gone up by a couple of points between meeting with the rheumatologists. But again, annoying but completely livable.
To finally get to the point, I am wondering if its a good idea to go on the predisone. I've read about people who can't get off it, and I'm wondering whether taking another round might create some kind of dynamic that makes it hard to get off later on. Is this crazy? Can it possibly make the PMR worse when I don't take predisone?
I asked my rheumatologist and she said no. I'd just feel better to hear the experience of anyone out there who has gone through something similar. I'm finding the decision difficult.
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Don't understand the EXTREME weakness as I try to lower dose of Prednisone. Has anyone else had this? I feel like I am living half a life if that. I see my rheumatologist in ten days. Down to 4.5 or 5 mg.
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1 ReactionYes ... I felt extreme fatigue/weakness for a long time on lower doses of prednisone. I had a low cortisol level caused by adrenal suppression from long term prednisone use.
Extreme weakness/fatigue is most likely a side effect of long term prednisone use. Prednisone suppresses the ability of the adrenal glands to produce cortisol. The symptoms of adrenal insufficiency usually begins when your prednisone dose is less than 5-7 mg of prednisone. The symptoms get worse before they improve as you slowly decrease your dose even further. Never stop prednisone abruptly because that could cause an adrenal crisis.
Unfortunately the only way to get your adrenals to start producing cortisol again is to stay on a low dose of prednisone. It can take a long time for the adrenals to start functioning again. People have a tendency to increase their prednisone dose to relieve the symptoms of adrenal insufficiency before they give their adrenals a chance to recover.
The symptoms of adrenal insufficiency should be "temporary" and usually improve after you get off prednisone. At least that was my experience.
@dadcue Thanks so much for your reply. I have been on Prednisone for ten months starting at 20 ml and have gotten down to 4.5 which leaves me really depleted in energy. I guess I should grit my teeth and live with it awhile longer until everything improves. I appreciate your encouragement. I would hate to up Prednisone.
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1 ReactionYou have done really well to get to 4.5 mg of prednisone after 10 months. The symptoms of adrenal insufficiency tends to be directly proportional to how high a dose and for how long you have taken prednisone. Hopefully your symptoms will start to improve soon.
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2 Reactions@dadcue You have given me hope on a day when I really needed it! Can't thank you enough.
Hi there. According to my doctor it’s a 1-2 yr journey but I was lucky. I started on 15mg and from my first blood tests my levels became normal. He reduced it to 12.5mh after a month (first blood test). Then another month down to 10mg. From that point it was a slow taper. After 1 yr I was off it with none of the side effects you worry about but I took calcium with vitamin D, kept exercising and monitored everything. I checked my eyes twice and have a few cataracts that are age related no prednisone caused. I had stiffness but not terrible pain when I finished it. The hip and pelvic pain has now gone - it went after two months. I’m just waiting for my shoulders and upper arms to get better although they already have. I was told that the inflammation will not go away without prednisone. Expect some fatigue later in the tapering after the glory highs of the pain relief in the early stages. If you are basically healthy otherwise it should be ok. Good luck.
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2 ReactionsHello @ksidorov Perhaps also ask about any ongoing trials ? if yours is a bona fide relapse you might be eligible . The conversation re: Clinical Trials has a link to an 1L17 trial from Novartis - but appears to be recruiting from limited cities and CANADA.
" pain is now getting worse in shoulders ..." May I ask if your pain is the same as you experienced in your initial onset . For me , i describe it more as stiffness and not wanting to raise my arms above my head. It is also referred to as "gel Phenomenon"
Why did your orthopeadists trat your pain without checking blood work , may i ask ?
" Morning stiffness and the gel phenomenon – Gelling, or stiffness with inactivity, is a hallmark of synovitis in the systemic rheumatic diseases in general, but in PMR, this phenomenon can be notably severe. Morning stiffness in PMR is invariable; its absence excludes a diagnosis of PMR." this is from : https://www.uptodate.com/contents/clinical-manifestations-and-diagnosis-of-polymyalgia-rheumatica
here is the link to the trial :
for the IL17 pathway in PMR : https://classic.clinicaltrials.gov/ct2/show/NCT05767034
AIN457
Cosentyx®
Polymyalgia rheumatica
Immunology
Phase 3
2026
IL17A inhibitor (Anti-interleukin-17 monoclonal antibody)
Good luck to you too.