PMR recurrence

You might consider other treatments such as Actemra.
Testing for IL-6 levels is available at referral labs. Checking your cardiovascular risk profile is important with chronic systemic inflammation.

I agree with seniormed. I would try one of the biologics. They have to be better than steroids long term.

What you have experienced is very common. I think PMR is like other autoimmune conditions because there are 3 different scenarios.

1) PMR can be a single occurrence. After PMR is treated, it doesn't happen again.

2) PMR can have a recurring pattern characterized by remission followed by recurring flares. This recurring pattern can occur during the prednisone taper but also it can be characterized by relapses following a period of remission after tapering off Prednisone.

3) PMR can be a chronic condition, stays active and never goes into remission.
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I had multiple relapses while I tapered off Prednisone. It wasn't because I tapered Prednisone too quickly. Relapsing PMR warrants consideration of biologic treatments that have been shown to provide "sustained remission" for many patients. After being on Prednisone for 12 years for relapsing PMR -- I have now been off Prednisone for 5 years. I haven't had any relapses thanks to a biologic called Actemra (tocilizumab). Despite what some people advise -- it isn't good to take Prednisone "long term" for years.

Check out biologic called Kevzara . Worked for me.

@dadcue Mike, the potential side affects of Actemra concern me. There is some concern in my case that I may have GCA and I have authorization for IV infusions, so I’ll be making a decision in the next couple of weeks.
I’ve been symptom free and started tapering down Prednisone from 40 mg to 35 mg. I’m tired, nauseous and sometimes slight headache. It seems that can just be part of the withdrawal.
I take Boniva and hope that helps my osteoporosis from worsening. I also take Eliquis for afíb. Since I’m new to this I have a lot to learn. I suspect my Rheumo will be pushing the Actemra because he says it’s hard to tweak out that diagnosis. I declined the bx. because I had already been on Prednisine for several weeks and I understand that you can be false negative.

I discovered the stomach side effects of prednisone on a you tube video. I think the physicians making videos realize how much we need information. In your case, if you had taken an acid reducing medication like over the counter Omeprazole, you may have been saved a hospitalization.

@pah17

Sorry I didn't respond to this sooner... must have missed it or forgot to respond. I really believe Actemra or Kevzara is worth trying. I can't promise that your experience will be as positive as mine has been. My only regret was that Actemra wasn't tried sooner. I had additional problems that were attributed to long term Prednisone use.

I don't recall too many problems with Prednisone initially. I originally took prednisone about 30 years ago so I wouldn't go blind in my left eye because of uveitis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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My ophthalmologist got concerned when he increased my dose to 100 mg. I made a comment about "not caring" if I ended up being blind because "I felt great." My ophthalmologist said I needed to taper off Prednisone because he didn't want me to feel too good!

It is a balancing act between feeling good and not so good. In the long term Prednisone made me feel not so good. This was especially true when I couldn't seem to taper off Prednisone and was totally exhausted. I think "quality of life" is derived from things that aren't prednisone. My quality of life improved when I got off Prednisone and wasn't so exhausted all the time. I was giddy when I tried swimming again and discovered I could still swim!

Actemra was presented to me as my "best chance" of ever getting off prednisone. If there is a chance ... in my opinion, I think people should try whatever is offered---methotrexate, Kevzara, anything that might help to decrease your prednisone dose. I try not to convince anyone. What made me want to try Actemra was when my rheumatologist said. "It was my choice but I wouldn't know if Actemra would work or not unless I tried it to see."

I only knew how much I wanted to be off Prednisone. I want to be off Actemra too but not anywhere near how much I wanted to be off Prednisone. Actemra doesn't seem to cause me any problems.