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← Return to Confused about PMR symptoms
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Hello,
New to the group. Back in July of 2023, within a week and a half, I went from normal to needing help getting in and out of bed and even using a cane. I am only in my late 50's and was playing soccer in an 18 and over women's league until the Pandemic hit.
My GP sent me for blood tests and my inflammatory markers were around 75. He immediately put me on 20 mgs of Prednisone. Within 2 days, it was like night and day. Almost pain free. I was referred to a Rheumatologist.
Fast forward to December. On 10 mgs with shoulder, hand and wrist pain and the usual morning stiffness, then Jan 9 mgs,... Feb 8 mgs pain is worse in the hands and wrists. Had blood tests and xray and ultltrasound done on hands and wrists. Saw the Rheumatologist and all tests were normal. No arthritis, no inflammation and blood test had normal inflammatory markers.
The rheumatologist thought that I could possibly have Fibromyalgia and not PMR because he couldn't explain the hand and wrist pain. I'm not convinced, especially after reading the comments here. He said to keep going on walks and watch the foods I eat. He said that Tylenol is my friend and keep reducing my dose by 1 mg per month. I see him in 3 months....... not sure if I can handle the pain for that long.
Has anyone else experienced this? Am I relapsing?
Replies to "Hello, New to the group. Back in July of 2023, within a week and a half,..."
Hello @dj13, I would like to add my welcome to Connect along with @dadcue and others. Like you, my first bout with PMR happened when I was 56. I was diagnosed by a Mayo rheumatologist after a referral from my primary care team. I was started on 20 mg prednisone also and within hours of my first dose it was like night and day as you said. I floundered some tapering down with prednisone but my rheumatologist told me I needed to listen to my body and keep a daily log of my pain on a scale of 1 to 10 along with my dosage of prednisone for the day. He told me when it came time to taper down to the next lower dose I should use my pain scale - if it was 2 or greater on my scale, then I would hold off for a week and try tapering again, or if it was greater he had me up the dosage to half of my previous taper down to see if that would provide pain relief. My first time with PMR took 3 and half years to taper off of prednisone with the last six months going back and forth between 1 mg and 1/2 mg until I could finally stop taking it and my pain was less than a 1 on my pain scale. Once I got moving in the morning the aches would generally go away.
Healthier eating and mild exercise/movement definitely plays a part in getting PMR into remission. My second time around with PMR was six years after it went into remission the first time. It only took 1 and half years the second time and I attribute the shorter time frame to eating better and exercising more than I did the first time. You might find the following discussions helpful in your PMR journey.
--- PMR Diet: Foods to eat and avoid: https://connect.mayoclinic.org/discussion/diet-and-pmr/
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
Do you keep a daily pain and dosage log?
To dj13:
Your timeline, dosages, and remaining symptoms closely mimic my own experiences, including playing soccer ! One difference…I am 81 !
Starting in October, initially on P20, my dose had to be adjusted to P30 to tame the PMR beast. I started tapering after 30 days at 5 per month, then 1 per month, now down to P7.
During my last rheumy visit in January, she said my inflammation markers were now normal, and we were no longer treating PMR. The goal is therefore to get off the prednisone as quickly and safely as possible, and to therefore continue the 1mg monthly taper. Also, that my wrist pains could be expected to continue, and that I could take Tylenol, NOT any NSAID due to the conflict with the prednisone.
During a routine cardiology visit in February, I happened to mention my ongoing wrist and thumb pain (which at that time was up to level 3 in the morning, but went away by 3PM). My cardiologist ordered a wrist Xray which did not disclose any sign of any of the arthritises. Also, my RA lab was normal. And so, the morning wrist pain remains an undiagnosed mystery which I will continue to willingly tolerate, especially as I recently increased my morning Tylenol to 1000mg which make me pain-free by 10AM. In any case, this morning pain is almost certainly NOT something that should be treated with an increased dose of prednisone. Unless it can be determined using testing that the pain is in fact or probably PMR, increasing the prednisone is probably not the correct solution for so many reasons, the main one being that it might make tapering to zero much more difficult without risking adrenal insufficiency.
My rheumy did give me permission to use OTC topical diclofenac 1% on my wrists if desired. Although diclofenac is an NSAID, if used topically only about 5% gets into your circulatory system and therefore does not create a problem with the concurrent prednisone as it would do if the diclofenac were taken orally in pill form. For the time being, I have decided that my current pain profile does not warrant experimenting with yet another drug.
Thought for the day: After being treated for PMR, returning pain is not always PMR, and should not be automatically treated with an increased dose of prednisone without testing and a doc agreeing.
Best of luck to everyone…this too shall pass !
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Welcome to the forum.
You might be one of the many people who have problems when they approach the 7 mg dose of prednisone. You certainly wouldn't be the only person that has problems as you taper down to 7 mg.
My problems would start at 10 mg and get worse with every 1 mg decrease until I got to 7 mg. At that point I would go back to 10 mg. For me it wasn't only a PMR problem. I had a problem with adrenal insufficiency.
You may want to try tapering by .5 mg (half a mg) increments instead of 1 mg increments. It is rough going when we get into single digits of prednisone.