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PMR relapse symptoms
For anyone who had PMR and tapered off steroids. Did your PMR come back? How quickly? And did it feel the same as the first time?
I’ve been off steroids for 1 month and feel a lot of stiffness which has grown increasingly each day. Mostly in hips, thighs, shoulders and hands as stiffness. This is not the same as my original full blown PMR. The stiffness is different every day and the worst only of it lasts a short while until I have moved around. But now the stiffness is lasting more throughout the day as a more mild annoying stiffness making it difficult to get around.
Wondering if others post PMR have similar issues and considering this to be a PMR flare.
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I've been on Prednisone since Oct 2023. I am now on 1mg and trying to stop completely. Some days are not easy.
I take turmeric with ginger daily as well as VitD and magnesium. I'm still very active but notice if I overdue my activity I ache. Tylenol does nothing to help , Aleve helps a little.
Not sure if my achiness is from the prednisone taper or from the PMR. It's been quite the journey.
Good luck to everyone on this pmr ride!
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1 ReactionI had PMR when I was 57. After 2 years of prednisone, I was in remission 12 years. It returned when I was 71. I got off prednisone in less than a year, but then it returned one year later, so I probably went too fast. I did a very slow taper this time and am actually taking 1/2 mg every other day and will be off soon. I don’t know what triggered a relapse after 12 years, but perhaps retiring, moving from a house we lived in 42 years and caring for grandkids played a part. I hope I stay in remission, but wouldn’t be surprised if it returned. When I get down under 5 mg of prednisone, I don’t worry too much, just take my time tapering.
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3 ReactionsSorry to hear about your relapses. I agree that under 5mg is less worrisome
Curious to know. Where the relapses the same intensity as your original PMR episode? (Debilitating?)
I take it every Monday 12mg
I’m kinda stiff an sore that day. But it soon settles down
I’m not sure how quickly it works. My dr only gave me a 4 week supply to see my reaction
Hmm. I've been taking prednisone every 2nd day for years. Now i'm wondering if that is why my operation for spinal stenosis hasn't eliminated my pain. No one has suggested it.
The first time, I didn’t know what was happening, so I tried stretching, exercises, acupuncture, etc. It got worse and worse until I finally had bloodwork drawn with high sed rate, etc and started prednisone and symptoms resolved overnight. The other times, I knew what was happening, so was diagnosed earlier. My fear is always GCA and did have some symptoms and a biopsy during my 3rd bout.
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2 Reactions"My fear is always GCA and did have some symptoms and a biopsy during my 3rd bout."
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I'm mostly over my fear of GCA even though my ophthalmologist and rheumatologist always screen me for signs and symptoms of GCA. I see both specialists fairly often. I have another autoimmune condition that can cause vision loss. It is called uveitis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
After more than 30 flares of uveitis followed by a long period of remission, I'm confident I can achieve remission as long as it is treated quickly with a high dose of Prednisone. I recognize uveitis flares so I know what to do when it flares up again. I'm confident that I can taper off Prednisone quickly when uveitis flares up. "Short term" prednisone isn't such a bad thing.
I'm more worried about PMR because that involved "long term" prednisone use. After I was diagnosed with PMR, I needed Prednisone for 12 years and had many of the side effects. Fortunately, I'm now on a biologic with minimal side effects to treat PMR. I have refractory PMR so a biologic was tried.
https://www.the-rheumatologist.org/article/how-to-treat-refractory-polymyalgia-rheumatica/
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The biologic I'm taking also seems to prevent my uveitis flares. Now my worst fear is that the biologic might stop working.
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