It has been a while since I gave an update. There are several reasons for that, which I will clarify in a minute.
In the meantime, how are you? Are you getting through your days, OK? I sure hope so.
I am now 2 1/2 years into PMR. Like all of us, I had planned to be OVER this ailment by now.
And believe me, I have tried! (like each of us). I even was off all steroids for two weeks last month! Now THAT'S good news, isn't it?
Not really. That's why I didn't shout it from the rooftops. I was not in remission. Just sick to death of taking the steroids, so I rushed the process of tapering these last few months.
Once I was below 5 mg of Pred (or the equivalent of hydrocortisone), I never really was comfortable. So when I hit 2.5 mg in my slow tapering process and was still stiff as a board, I figured, what the heck? I might as well go off steroids and try Aleve to see how I feel.
So when I got the green light from my endo that it was "safe" from my Prednisone-induced adrenal insufficiency standpoint to taper off steroids, I leaped off the train rather quickly.
However, I was pretty miserable and stiff while off the stuff and was definitely NOT over PMR, but I just wanted off the darn pills! I'm sure that you can relate.
My inflammatory markers did go up but not as high as when I was first diagnosed. My rheumatologist e-mailed me asking what was up and how I felt since the markers did not look good. I ignored her because I wanted to be free from the devil's tic tacs, hoping things would just right themselves over time.
I had been waiting a bit to report my "success" to you, hoping I could stay off the steroids and join those in remission. It did not happen!
... Enter a 10-day adult family vacation to a place where walking and hiking (a lot) were the main entertainment! Jumping into an outdoorsy vaca with a full itinerary required me to hop back on the "Roid" Railroad since I was stiff to begin with.
Not wanting to disturb my slow progress with my adrenal glands "waking" up, I only took 2 1/2 mg of Pred each day while on vaca. In retrospect, 5 mg would have made me more comfortable, but I just wanted to be able to function on the trip.
As it was, my husband, brother, sister-in-law, and I flew to Sedona, Arizona, and explored numerous peaky state parks and red rock formations and ate a lot of great food. We had a wonderful time!
I was definitely not comfortable while I was there; my husband had to help me a lot when hiking and getting off and on a horse (I was a little scared, I must admit). However, I am proud to report that I was able to do one reasonably easy hike a day (and one that kind of killed me!). My comrades were patient with me, and I was more than happy to allow them time to hike the more challenging trails while I rested.
But I did it, and I am glad!
So now here I sit, having contracted Covid on the way home from our trip. I do not have much to complain about as it was a mild case, and my endo had instructed me to take 10mg of Pred daily to help ease the stress on my adrenals due to the illness. Since it turned out to be a mild case, 5 mg seemed to hold me fine while sick.
And yes, 5 mg of Pred really feels good for my PMR stiffness too! Zero pain and stiffness.
5 mg of Pred seems to be my sweet spot for PMR, it seems.
I'm not planning to park here for long, though. My goal is still to be off steroids. I hope to one day share "the good news" of PMR remission and that I am looking at steroids in the review mirror once again. A girl can hope!
Cheers, my friends! Here's to good news for all of us.