PMR and pain levels

Hi Debbie @debbiebas216, When I woke up with a pain level above 2 on my scale of 0 to 10, that was a no go for whatever level of prednisone I was on. I either increase the dosage to half of what I had tapered down on my previous taper or went all the way back to the level that had me pain free. I'm not a doctor but it does seem like you may be a little too aggressive on your tapering schedule since you were diagnosed at the end of October which is only a little over 4 months ago. Others that have had more pain in the mornings have had some success splitting their daily dose into morning/afternoon or evening. If you haven't already seen it, you might want to take a look at the discussion started by @dadcue below:

-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
You aren't alone struggling with the PMR and pain levels. Here's a search link that lists all of the related discussions and member comments - https://connect.mayoclinic.org/search/discussions/?search=PMR%20and%20pain%20levels.

Thank you John. You are a wonderful source of information and good advice. I have been reading other posts re tapering.
The 1 mg every 2 weeks is coming from my rheumatologist. She originally had me taper 2.5 every 2 weeks which did not bring good results. Several posts I’ve looked at they seem to taper once a month and even .5 taper. She’s anxious to get me off prednisone and on leflunomide but I am refusing that option. The side effects are troubling leaving me open to infection and cancer, I’d rather live with the morning pain. I will talk to her at my next appointment re my tapering schedule. She has ideas trying to get me pain free but in the end will give me other options.
I also have a small adenoma on one of my adrenal glands and wonder if that’s doing anything but the soonest I can get an appointment to an endocrinologist is May.

Hi @debbiebas216, I totally understand your desire to get off of Prednisone as quickly as possible. It does an incredible job at treating PMR but can leave a trail of nasty side effects. Unfortunately, if your body is not “finished with PMR”, the consequences of a fast taper could be very unpleasant and linger. It sounds like your current pain has thankfully been tolerable. A slow taper is what most medical professionals recommend so that your body can begin producing its own cortisol at sufficient levels. I know that there are medical professionals in our group who can explain the science so hopefully they will chime in. I just wanted to give you this caution. Good luck and I pray we are all pain free in the near future! ❤️

I'm not sure if my method of tapering will help. I hope it does. After trying to taper too fast my body could not handle it and my PMR symptoms were bad. So I decided that slow was the way to go. It does take patience on our part. I was "officially" diagnosed last year in July, but I think I had PMR since April or May. I just didn't realize it.
Ive managed to get down to 8mg 4 days of the week and 7.5mg every other day for 4 weeks.
Before I was taping down 1mg per week. Too fast!
My body is still sore in the AM especially after exercising or physical activity day before. But I'm tolerating the pain for now.
That's my input. Everyone is different but I hope it helps.
Be patient and stay strong!

Welcome @bravo1, Thanks for sharing how you taper. We are all different and it definitely helps when we can share experiences. Wished I would have paid more attention my first time around with PMR that took 3 and half years to get off of prednisone with the last year going back and forth between 1/2 mg and 1 mg until I was finally able to stop taking it with minimal aches when I got up in the morning.

Have you made any lifestyle changes that help?

Hey thanks for the welcome.
Unfortunately the only lifestyle changes have been negative.
Before PMR I was active in sports, did physical labor, was never sick, ride my Harley and was always a happy person.
So now, I've had to limit my physical activities and I'm not the same happy person I was. That's the only lifestyle changes I've had to make. I was on a good diet, and stayed healthy.
I can't even ride my Harley anymore!
Sad but true. I am determined to get back!

Methotrexate weekly works for me. Weened off prednisone, acremra, leflunomide.

Hi. I'm new to the group. Diagnosed in early January after three months of We aren't sure from my PCP and two specialists and a bunch of tests. I too was two weeks past vaccines although I'd had them all along with no problems.
Because I'm super-sensitive to prednisone, I've been titrating up from 1 mg (now at 8) to find the sweet spot of no symptoms and my symptoms are less and less. But I've gained 12 pounds since starting the drug, am miserably jittery all the time, and beginning to experience the fatigue and depression. What a shit show!

I have been on many medication‘s for my PMR. They work until they don’t work for me!!! right now I am in quite a bit of pain!!! my doctor just started me on methotrexate once a week. How long did it take for the methotrexate to work for you? I would appreciate any help that you can give me!!! my very best wishes to you!!!

Yes, I’m having side effects too. Better now that I’m tapering and presently just started 6 mg. At a higher dose I was bouncing off the walls and lots of heart palpitations, depression etc et . I’ve gained 4-5 pounds but I’m trying gluten free when possible and lots of salads with protein. Helps.