PMR relapse symptoms

@abbeyc and how many doctors just put them back on prednisone again, I wonder?
I was totally thinking that after I’m down to my last dose and off them and the pain starts again, I’d have to go on them again. This article gave me a new perspective and that we should work through any pain that pops up by other methods. Is this what you took from it?

@vjm0223

In my case ... I had PMR compounded by adrenal insufficiency. It was absolutely impossible for me to get below 7 mg of prednisone. Keep in mind that I took Prednisone for 12 years for PMR.

When I started Actemra (tocilizumab) it became clear to my rheumatologist what was happening. Actemra did its job and controlled PMR while I tapered my prednisone dose down to 3 mg. Actemra didn't suppress my adrenal function while it controlled PMR pain.

Nevertheless ... I had to remain on 3 mg of Prednisone for months until my adrenals regained some of their function. I was very "uncomfortable" staying on 3 mg of Prednisone in the sense that I didn't feel well however, my PMR pain was controlled. I had other aches and pains but not PMR pain.

I had permission to increase my Prednisone dose if I felt the need but I needed to resist the temptation if I expected my adrenal function to return. Fortunately, I had a good endocrinologist who talked me through what I should expect.

The incredible thing to me was what my endocrinologist told me after my cortisol level improved while I was still on 3 mg of Prednisone. She said 3 mg was such a low dose that there was no need for me to taper ... I could simply go to zero and discontinue Prednisone. I did a fast taper from 3 mg to zero but I was told that I didn't need to as long as my cortisol level was "adequate." After stopping Prednisone, I was also given permission to restart Prednisone again if I felt the need.

Two things needed to happen:

First --- PMR needed to be in remission so that I didn't need Prednisone anymore. Actemra has kept my PMR symptoms under control for more than 5 years which is how long I have been off Prednisone. Actemra doesn't suppress my adrenal function like Prednisone did.

Second --- My cortisol level needed to return to normal levels before I could taper off Prednisone. It took the better part of a year on a very low dose of Prednisone for my adrenal function to improve. Even when I discontinued Prednisone, my endocrinologist still didn't know if my cortisol level would be adequate every day going forward. She said I should expect good days and bad days but my adrenal function should continue to improve if I could refrain from taking Prednisone.

@vjm0223 that’s what I’m doing. I have no intention of ever going back on prednisone unless I have a complete relapse which leaves me unable to move or walk. And next time I know not to go back up in dose with every little new ache when tapering off.
In the meantime I am working through it with hopes it will eventually subside all together. It’s manageable right now.

@vjm0223

Thanks so much. It really nailed my experience tapering.

@dadcue
I have been on prednisone for almost 4 months. I am currently at 5 mg. My endocrinologist checked my adrenals for cortisol production and he said it was at a normal level. Have had 3 kevzara injections so far and am anxious to taper off prednisone sooner than later. My rheumatologist said to taper 1 mg per 15 days. Hopefully I can taper without too much discomfort since I haven’t been on prednisone that long.

@abbeyc I always Google my questions and read from respected institutions like the Mayo Clinic and Cleveland Clinic. If you notice form reading everyone's statements here, people are getting some very different information from their doctors. Some of the doctors seem very uninformed. Like any profession, all doctors are not equal. I have had very different opinions from surgeons regarding my spinal surgery. I'm so glad I checked out more than 1 surgeon. It ended up being a real benefit to me. Not all doctors are up with the latest information - just like any other professional.

I spent about six months getting off Prednisone from PMR and the next month experienced severe kidney failure (GFR 27). Followed Ponticelli regimen for next six months and then a year again tapering off Prednisone. Both PMR and Kidneys now in remission with no pain or stiffness for over a year now, thank the Lord.

@aisp3b yes I’m well aware. I feel like we have to interview our doctors first before going forward with them but the process is not really set up that way.

I’m in the process of decreasing my prednisone I have found that my pain is increasing my doctor suggested I up at 1 mg but I’m still in a lot of pain
Actually, my pain is mostly in my shoulders and arms, but it does resonate down to my legs, it’s lasting all day

Welcome @dkucan, Tapering off of prednisone can be a challenge. My first time took 3 and half years with the last six months going back and forth between 1 mg and 1/2 mg before I could finally stop taking it without having significant pain the following morning. Most of my pain was also in my shoulders and arms. You might find a discussion started by @dadcue helpful:
-- 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/
Some folks including myself have found it helpful to keep a daily journal of their level of pain/symptoms along with their dosage of prednisone. How long have you been on prednisone for PMR? What was your starting dose?