Confused about PMR symptoms

I have been on a PMR journey for almost 1 1/2 years. I like (and consult) this Mayo Clinic site. Another site that has been helpful is healthunlocked.com/PMRGCAuk — a British site with a lot of members who have or had PMR and GCA. The main posters on that site are NOT doctors, so their suggestions are not medical advice, but they are experienced about PMR. They advocate a slow taper of prednisone. A rule of thumb often mentioned is not to taper more than 10% of your current dose. So, for 15 mg, the maximum taper would be 1.5 mg, and you might spend 3-4 weeks there before lowering again. I am not trying to give medical advice, but this approach has worked well for me so far. Everyone’s PMR journey is a little different. I wish you the best on yours.

I started prednisone in April for PMR. Once I had tapered to 9mg I found reducing by 0.5 mg once a fortnight was better than 1mg a month.
I never had wrist pain until recently, and then never considered it was part of PMR, although the pain does improve after midday.
Today I had a neurological test for carpal tunnel but that isn’t the problem.
I was concerned it could be arthritis but the neurologist believes it is PMR which makes more sense. He also said medicine is not black or white which I have learnt with PMR!
I will see my specialist in Dec.

Wrist pain and finger muscle spasms can be somewhat common with PMR. It can usually be controlled by delaying further tapering until it stops, or possibly increasing a bit until it stops. Depends to some extent how much (if any) pain you are willing to tolerate. Wrist pain was my last symptom to disappear on 30mg. Now have tapered to 15 with no pain. Can be a long journey. Good luck.

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?

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?

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.

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?

@johnbishop Thanks for the welcome and info.
If my inflammatory markers are normal, does diet still come into play?
I have reduced fried foods and meat portions along with eating more veggies. I am a meat lover and won't go full on vegetarian. I will have a look at the links you provided for more info.
I have an office job which is taking it's toll in terms of not moving enough.
I try to go for walks but hard to do so when in pain.