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

@grownupcf Fundamentally either your adrenal glands will wake up as you taper or at some point they will not. Slower tapering allows them a little extra time as well as protects you from tapering too much if there is a problem. Patience is the required skill. I have had to learn that I am not in charge of what my body does, when it does it and why. Whole new way for me to think about my body.

@spacypantz74 You can ask your doctor's office if they can connect you with a social worker who can help you navigate finding assistance with a drug cost. Also, please check out GoodRx.com they say your copay might be as low as $0.00 - yes nothing. Don't give up until you have exhausted your options.

@grownupcf pls note, Tylenol for Arthritis is not the same as Tylenol.
Weather for me is higher dew point. COld is fine, it’s hot humid that gives me a problem. I check the weather every morning. Have been able to use 1 Ty for Arth at a time….takes the edge off.
Rule of the road is Patience…..not in our DNA. 🤞

@jabrown0407 Thank you for sharing your experience. You were on Prednisone a long time before it was even suggested, and only after your diagnosis of GCA. Seems like a reluctance to recommend a biologic until prednisone use is exhausted, or your condition becomes more serious such as GCA.
Biologics seem to help so many wean off prednisone, it’s a shame people on long term steroid use aren’t offered it sooner. I know it comes with risks and costs are higher. That may be partly why. Thinking out loud here, and just trying to understand how it all works. Thank again for your input.

@lmguen Agreed, but unfortunately they don't know and while some doctor's and researcher do care about the current situation, mostly not a lot is being done because it's simply not a priority. Complicated by the fact that it all seems to be beyond our current knowledge to even find a way of establishing what exactly the underlying issue is. Yes, too hard perhaps.

@teddyz all great questions. I have asked these of doctors and they don't know. The answer is always, "could be all or any of those".

@kathy22wright
Thank you. This was very helpful to me. The rheumy couldn’t decide on a Dx because my ssDNA was high, along with ESR, +ANA; c-rp. and the prednisone started causing awful symptoms. I didn’t taper, I simply quit taking it out of ignorance. My PCR who diagnosed PMR originally, is helping me manage this now. I take either 5 mg of prednisone or 2.5 mg when pain flares up - just one or 2 days. It’s been 1.5 yrs and frequent meditation every day seems to help most. Chronic stress of caring for parents in their 90’s seems to be my trigger, and this group has helped keep me sane. It seems that I took so much prednisone for so long, that my blood sugar is totally out of whack. I can handle the pain & stiffness, but this utter exhaustion is my main concern. I am currently doing the AIP diet to see if it helps. I just started the phase where I add 1 food at a time back. 🤞🏻

@gmdb I wonder if other disciplines, like physical therapy, might be able to give us some insight.

@teddyz not a lot of luck there either. Have had regular physiotherapy sessions over the last 6 months. Been great for when I tore the achilles, which likely wasn't related to PMR or pred. But apart from needing to go low (impact) and slow for PMR affected muscles, and the need to keep exercise up to prevent muscle wastage, there hasn't been much insight into the tangled pain cycle we experience.

I wish I knew what I was getting into when I started meds for PMR .I would not have taken the treatment .Over 5 years of medication and now off Prednisone for about six weeks I am in agony. There seems no end to it and I am so depressed I can barely function.I hope the end is near