How to avoid flares

I’m some odd hybrid of PMR and RA. In 2011, I had acute onset of profound pain, numbness and weakness that within 3 days left me incapacitated- unable to open a bottle of water or a door, unable to walk in anything but sneakers, with greatest pain in hips, shoulders, knees, ankles. I was sero negative but found almost immediate relief from Humira. My symptoms settled into hands and feet predominantly. In 2019 I moved and a new doc retested Me and I’m now sero positive. I’m on Remicade infusions that are pretty effective. But when I flare it’s always to big joints like when it began. Hips, shoulders, knees, ankles.
Has anyone encountered this RA/PMR symptom mixture ?

BUT -‘to return to this topic - in a flare, I almost always have the pain march up from my fingers to my wrists to my elbows to my shoulders, where it settles in for a few days. Same Pattern for Foot Pain that migrates up to my hips. It’s not gruesome except at night. And the whole cycle lasts 7-10 days usually. So it’s not avoidance but it is a pattern. Gratefully not a frequent one

Has anyone encountered this RA/PMR symptom mixture?

You aren't alone @pb50. I was diagnosed with a type of seronegative inflammatory arthritis in 1992 at the age of 38.. The diagnosis was called reactive arthritis (ReA). It gets the name from a reaction to an infection. My lumbar spine and large joints were under attack. ReA is associated with uveitis so my eye was under attack as well. I'm sure an enteric infection triggered ReA. A genetic test was done and I was found to be genetically susceptible. More often than not, whenever I had another infection another flare was triggered.

As if ReA and uveitis weren't enough, PMR was added to the mix in 2007 at the age of 52. I guess I was "old enough" to have PMR.

I usually say, "flares happen for no reason" because no one thing ever caused my flares. I can say a flu vaccine, a dental procedure, a flight to Europe, multiple infections, stress from almost anything have triggered flares. Of course, the things that preceded the flares may have been coincidental so I can't say with certainty any one thing triggered flares. My flares could happen rapidly and many times overnight. Maybe sleep triggered the flare.

I can say with some certainty, tapering my prednisone too quickly had nothing to do with causing a flare. I took prednisone for a very long time so the idea that I tapered too quickly is laughable. I couldn't get anywhere near 10 mg of prednisone for the first 10 years of PMR.

I will say my flares might have happened when my prednisone dose was inadequate for the circumstances. The circumstances were usually stressful in nature. My suspicion is the HPA axis and cortisol had something to do with it.

Not that I understand much of the content in the following link but I believe impairments in my HPA axis had something to do with my flares.

I know for a fact that my systemic inflammation wasn't being regulated very well.

Oops ,,, I copied and pasted the wrong link. I will try to find the one I intended to post.

My son had reactive arthritis! His came after knee surgery and his orthopedic age went from a 25 year old to a 75 yr old almost overnight. A medical school in Charleston SC with a unit dedicated to unexpected surgical outcomes made the diagnosis. Ultimately they got him on prednisone and he normalized. But scary. And six yrs later I was diagnosed with RA. Weird.

Thanks for replying.

So do you treat PMR similarly to RA? I am infused with Remicade every six weeks. Are you on Prednisone only?

I recovered quickly with prednisone when I was first diagnosed when reactive arthritis although oral corticosteroids are not recommended.

I was told at that time reactive arthritis was diagnosed that it could be a one-time occurrence OR it could recur and have a recurring pattern OR it could become chronic. From my experience it did all three.

With the symptoms you have, and familial tendencies, I am surprised you weren't diagnosed with a type of spondyloarthritis. Remicade is frequently tried for spondyloarthritis.

No ... PMR isn't treated the same as RA. With PMR you are put on prednisone and you are supposed to wait until PMR "burns itself out." This explains why I took prednisone for so long. Other medications were used as "steroid sparing" medications without much success overall. They do work for some people but I wasn't one of them.

There weren't any biologics until recently for PMR. For RA it was learned that long term prednisone didn't prevent the damage being done. Biologics to treat RA are now used more often and there are quite a few biologics available.

I'm now taking a biologic to treat PMR. It was originally developed for RA. I was off prednisone a year later. The biologic I take isn't "optimal" for reactive arthritis and uveitis but it seems to work for me.

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The biologic that targeted PMR was Actemra (tocilizumab) and it worked for me.

Another biologic was tried. It was thought to be "optimal" for uveitis. It was called Humira but it didn't seem to work for PMR.

A biologic that is now FDA approved for PMR is called Kevzara.

A recent painful lesson. Flares are complicated. With a drop from 8mg to 7mg of prednisone I had a horrible flare. Very painful. So I thought well I’ll just go back up to 8mg and the flare will go away. NOPE. Then up to 10, 15, and now 20mg before the pain subsided again. In the meanwhile my inflammation numbers exploded again. The extra slow taper under 10mg of prednisone is really important. Maybe even 1/2mg at a time. What caused the flare besides the drop in prednisone, probably a high level of stress. A change in diet can help. Hard to avoid stress right now.

Interesting. I had a similar mindset. The anticipation of reducing the Prednisone asap sounded good to me. Since my flare up in September my perspective is on the more conservative side now. I purposely stayed on 10mg two months after being on 15mg for ten days. I was suposed to have only been on 10 mg one month. Worried about moving too fast. Now down to 9mg for December. See my Doctor tomorrow. I'll be asking for "low and slow".

In reference to your question about flares; my flare avoidance (developing survival skills) would be:
1. Avoid letting my body get too cold.
2. Avoid reducing my prednisone if I'm recovering from mild to moderate physical exertion.
3. Make rest and adaquate sleep a priority.
I know we're all uniquely different. I'm seeing some undeniable similarities that are helping me make decisions about my care plan. And certainly appreciate the interactive support here. Ernie