PMR - What do you wish you had known . . .

@wendybfrompgbc Please have your CRP and Sed Rate tested again in 3 weeks. Personally it sounds like you are not in remission and b going completely off the prednisone is contributing to the return of PRM - aka a Flare.
If your PMR did not go into remission while on the steroids, then you still need something to help manage your inflammation that PMR is causing. This is where steroid sparing drugs come into play. Talk with our doctor about getting on a steroid sparing drug to support you going off steroids.

@pmrnew Exercise naturally causes inflammation and adding that on top of the PMR inflammation. That is why it hurts on days you exercise and it does not hurt on days you don't exercise. If you insist on working out, then you might dial it back to where you can do light exercisies and still not hurt.
You are smart to want to exercise. I did not and now I am dealing with some atrophy of my tendons and other connective tissues. It is a delicate dance to find the exercise Goldilocks zone - the "just right" amount where nothing is lost and damage is not done. Here's hoping you can find your zone.

@tweet Rinvoq is not FDA approved for PMR, mainly because the studies have not been done. I know it is used off-label for PMR treatments. It is a JAK inhibitor and functions differently than the FDA approved IL-6 inhibitors. I suspect you are possibly reacting to one or more of the chemicals that Rinvoq is compounded with rather than the drug itself.
I can take the Brand form of my blood pressure drug but the generic causes my BP to go up into stroke territory, like 250/130. I have an appointment later this Fall to be tested for drug related sensitivities. It is a reasonably new subspeciality of an allergist and only a few hundred doctors in the US focus on it.

Thank you for asking what I wish I had known. After almost two years walking this journey I am profoundly changed. This is what I wish I had known when I embarked on this path... That I was really, really sick
That I would not be well soon
That I might get worse
That I might get better
That I would be dependent upon everyone for almost everything
That my family was scared
That my family wanted to help, even when I said I did not need it
That I needed help, even when I said I did not
That I would feel everything was taken from me – dreams, hopes, expectations, my future
That this was a long, long journey
That I would endure layers of loss, not just my health
That I would be depressed
That I would be exhausted and could not advocate for myself
That everything I believed, I would question
That the only way through was through
That healing was more than about my body
That I will learn how to manage this
That I need to celebrate incremental gains
That life is only FOR NOW
That I will learn how to thrive...
I am grateful for this network.

@remargulies All I can say is that I am now 6 weeks into the prednisone saga and although my PMR symptoms are 'controlled' by this drug, the multitude of side-effects has made my life unbearable. No sleep. Constant stomach pain. Hot flashes and sweats. Everything tastes like metal and bitter. Not eating or sleeping due to side effects. I am starting to think that the side-effects of prednisone far outweigh the benefits. Seeing my Rheumy next week and hope to go on some 'steroid-sparing' meds to help lower the prednisone dose. If that doesn't help, I don't know what I will do!!!

@sbgigi
So sorry to hear this. I started 15 mg 7 weeks ago, with control of all symptoms, and 1 week into my taper. A comparison of our reactions is proof of the wild individuality of responses if any is needed--all my side-effects have been positive. It pains me to read your post. Damn.

May I ask what your dosage is?

@remargulies
Same here! I was not sleeping and I could barely walk, even with the help of a cane and frequent stops. I spent many a night on the reclining couch, watching old movies and trying to find a comfortable position until I fell asleep for a couple of hours out of exhaustion. 25mg prednisone was like a miracle. It didn't take away all the shoulder pain but it took all the hip girdle pain away. I still wasn't able to sleep perfectly because of the prednisone but I was functioning again. I've just started kevzara because of a subsequent SMM diagnosis but my prednisone tapering reminded me of just how much pain I was having before prednisone.

@p0rtia I was started on 20mg which mostly worked, but then almost immediately lowered to 15mg, when all PMR symptoms returned. Doc then moved me up to 30mg. No matter the level of Prednisone I have multiple life-changing side effects from the prednisone. At least as hard to live with as the acute phase of PMR - maybe worse! But my situation may be different as my Rheumy and I are certain I had the PMr for at least 6 months before the 'acute' flare when I couldn't even walk! So perhaps that's why I need such a high dose? Anyone else comment on this?

@sbgigi Thanks for the detail. Wow. So tough. <3 Okay, here's me: I first became aware that my shoulders no functioned as they should 2.5 to 3 years ago. Because I had previsiously had bilateral statin-induced myopathy in my thighs and biceps, I thought it was that (I had been switched to a different statin). No amount of PT or massage helped.

About 18 months ago, I had a prolapsed biceps tendon in my left shoulder--only a guess, but my belief is it happened because my biceps, and by that time my deltoid, was so incredibly tight. I PT'ed that with some success--in the sense that the tendon did not prolapse anymore--but I could not raise my left arm for anything. Could raise right arm but not do much with it.

A year ago June, my PCP introduced me to the term PMR and did the inflammation tests for the first time: SED was 70 and C-RP was 1.9 mg/dL Made appointment with rheumy for October. In Jan my SED topped out at 104 and C-RP at 3.2. That's when I found y'all.

So my sense is that I've had PMR for years. And yet within hours of that first 15 mg of prednisone, the symptoms started to lessen, and in four days they were gone. My shoulders were still a mess, but daily PT now does the trick.

No rhyme or reason, is there.

@sbgigi
Did you ask your Dr. to explain clearly why they decided on giving you 30 instead of 20 mg? Maybe it was the severity of your symptoms coming back? I would definitely ask. I always ask direct questions like that to get those answers from the doctor who has made those decisions so I don’t have to wonder. I have learned to advocate for myself over the decades of dealing with autoimmune diseases & a big part of that is learning as much as I can about my disease and about the treatments. And that includes asking questions.
I, too have a lot of bad side effects from steroids. They have been a lifesaver but now that I’m better from recent GCA/PMR firestorm, I’m tapering slowly off prednisone. I was getting symptoms back when going from 30mg. to 20 so my Rheumatologist added a weekly shot of Actemra & it is helping me already. I will be trying to reduce prednisone dose tomorrow & am hopeful I am still ok. I am staying in touch with my Rheumatologist during this process. He wanted me to let him know what symptoms are coming back at each reduced dose.
Have you asked your doctor if you could try one of the biologics to try to help you taper off steroids?