How to avoid flares

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.

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.

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

This is fascinating to me. I began my treatment with Humira and methotrexate and it worked until the mtx caused elevated liver enzymes. When we reduced mtx, I developed antibodies to Humira and had to switch to Enbrel. That worked well for 2 yrs and then it didn’t. So I was switched to Remicade infusions and they are still working well.

Today there a lot of biologic options for RA. It’s curious that a condition so closely related isn’t relieved by them.

I try to power through flares because I want to reserve prednisone for urgent situations. Thankfully they’re uncommon for me. But when they come I watch it unfold from distal joints to more proximal and larger ones and in 10-14 days it’s usually done.

Do you have PMR too? Prednisone is used almost exclusively to treat PMR. I'm familiar with Humira, Embrel and Remicade. As long as Remicade works to change anything.

Actemra was originally used for RA and still is. It targets a different inflammation pathway than the biologics you have been on. Actemra works on the inflammtion pathway that is implicated in PMR.

When a person has both ReA and PMR, my rheumatologist says it is nearly impossible to treat everything. I assume the same is true for RA and PMR.

I don't take prednisone anymore but prednisone is still prescribed to me on an "as needed" basis.

Thanks for your response. To clarify, I haven’t experienced ReA- my then 25 yo son did following knee surgery. That was about 3 yrs before I had my extremely acute and intensive onset of seronegative RA in 2012. My Rheumatologist in NYC made that call.
I’ve had flares over the last dozen years but the pattern is that it begins distally in fingers and/or toes and marches up to elbow or knee then to shoulders and/or hips. Where it is disruptive to activity and sleep for a week to 10 days and then just subsides over 2-3 days.

I had a bad experience with steroids in the 80’s before back surgery for ruptured disc, so had always refused steroids until early November of this year when I asked for it in a particularly painful flare. Amazing stuff. Pain, mood, energy, mental acuity - I was pinging on all cylinders. 😁 I will have to restrain myself not to want it every time.

So the fact that my pain in flares always settles in large joints and my initial symptoms included large joints is why I say I’m an odd duck mix of RA and PMR. That may not be a thing.

Yes ... prednisone is amazing stuff. I had a good relationship with my rheumatologist. I said things about prednisone which I probably shouldn't say. Just to give you an idea about what was said --- I asked my rheumaologist why prednisone wasn't a "controlled substance?" My rheumatologist said she didn't want me to become "reliant" on prednisone but it wasn't addictive.

It was my ophthalmologist who prescribed the maximum amount of prednisone for uveitis. Since uveitis can cause vision loss, the maximum amount of prednisone was justified. Even my ophthalmologist said he didn't want me to feel "too good."

What was your bad experience on steroids? I'm a nurse so I have seen everything. Patients get steroids for many reasons. Fortunately, the PMR dose of prednisone is considered to be "low dose" and "relatively safe" if prednisone isn't taken "too long."

Well consider it was the 80’s. I was in neurophysiology at a children’s hospital and had lunged to catch a 3 yr old about to jump off a bed. Classic ruptured disc. But insurance required conservative treatment first - at home traction and steroids. I don’t recall the specific drug or dose but it was a 6 or 7 day blister pack. I had a psych response. Inappropriate uncontrolled crying, laughing, just wild emotional swings. Wild temp swings or at least indicators of such like sweating, flushing, then shivering. Two weeks later I was on the table having a hemi laminectomy at L5-S1. Total success to this day. But that reaction to steroids was one I hope To never repeat.

Thank you for sharing that. There are some side effects that nobody wants to talk about. Steroid psychosis is one side effect that is more common than people think. I thought your bad experience was something like you described. We would not call this side effect a psychotic event. We would tell people they were having "mental status changes."

I haven't had any side effects like yours but I confess to "living on the edge" a few times.