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

I wish I had realized that all autoimmune diseases are chronic and that remission is the long-term goal. When I first went to a Rheumy I thought that we could get me well and I would be on my way. Kinda like having a broken arm - a cast, some drugs, some therapy - and now you are as good as new. So wrong with autoimmune diseases. Big difference in setting expectations, goals, communications, etc.

@jabrowm0407, and all..
. So true! I needed basic information about autoimmune diseases, although I began this cra,y journey when I was 40, with Sarcoidosis.. And a very high dose of Prednisone for 8 months before tapering, slowly. But, I surly learned about Predisond and the joys of side effects since then. It did give me some tdars in remission, though.

I wish I had known the time it takes to taper off prednisone and the risks of using it. At first, the relief from the PMR pain is so quick and profound it feels like a miracle. But the side effects are real, rearing their heads like a Medusa shortly after that first wave of pain relief. At one time, I thought if I ever get off prednisone and have another flare, I’d prefer to manage the pain than to revert to prednisone, but with more research I learned doing so increases the risk of GCA and even worse outcomes from the unchecked PMR. It’s a situation with only one path out: prednisone to manage PMR and then the human managing the prednisone for a very long time. Only about 25% of us will walk away from PMR after a ~2-year battle. The rest will continue to live with it, hoping to awake every day flare free, or intercepting a flare early enough to control it with as little prednisone as possible. This disorder is not for the meek, and for me, it takes every ounce self care I can muster to manage it, including the toll on my mental health. As they say, the only way out is through.

I wish that there was a professional to talk to about why autoimmune diseases happen and what is the reason your body attacks self. I hate just medicating for symptoms of disease; there should be a root cause! I have read a lot about GCA but still have unanswered questions or fears when I get a headache or temple area hurts. Is it from GCA. Worry wart I guess!!

I'm newly diagnosed (March '26) and yes, I wish I'd have known more about the tapering challenges of prednisone. Not that it'd have made much difference, but I was contantly emailing my doctor through the patient portal to ask if these symptoms were "normal." The very first 20mg dose did feel like a miracle! No pain! No stiffnes! And I, too, would like to know more about "why" the body seems to suddenly want to attack itself. Before my symptoms began, I'd had a stressful several months: my father-in-law died, my mom died, I'd had basal thumb joint surgery, my sister fell on black ice and broke her hip. I didn't feel stressed, just dealt with everything but the first symptom started about 4 weeks after my surgery when, at a follow up appt, I asked my surgeon if it was normal to feel pain further up my arm to my elbow. He said "no.' But I assumed I was overcompensating or something. By mid-Feb both arms--wrists, elbow, shoulders--were stiff and hurting.
Why and how might accumulated stress trigger and autoimmune response?

Another thing, since I'm "new" to this disease, I'm not clear on what is an actual "flare" and what just continues to be dealing with the symptoms after weaning off prednisone? I'm taking both hydroxychloroquin and methotrexate and almost finished with 2.5mg prednisone, and, while it's only been a couple weeks on the methotrexate, I still have pain and stiffness in shoulders, knees, elbows, wrists. Not as bad as it was before diagnosed, but still not total relief.

Yes, the what's an actual flare question. I feel better and try to do more activity or exercise. Is the pain afterward PMR, just being out of shape after 4 years of being ill, or just because I'm 4 years older? And does it make any difference why I'm hurting?

I wish I had a Rheumatologist that explained in detail the journey ahead….as in the ups, downs , numerous alternative methods for relief that are not drugs. If introducing a new drug…..explain the benefits, don’t shuffle me off to the PA one visit and the Dr the next…..and vice versa.
I am very fortunate to have a wonderful support group, great PCP, orthopedic consultant, a trainer that specializes in functional mobility, and she has autoimmune issues too, counseling etc. Fabulous friends and spouse to keep me motivated too.
There is a Strong need to get out of one’s self and be with others, if only as a “seat at the table” shall we say. Try everything and anything for relief, peace of mind. Find this blog.

Thank you jabrown for asking this question. I only hope that I, too, can be the contributor you are and have been to us all.

Lastly, this blog was and is the most important thing to happen to me, outside of my support group. Don’t drop out when things are good…..we need to know that, we need to know when they are not so good. We need to know these stories to validate our journey.

Like others, I wish I had known about the trajectory of the prednisone taper - specifically, that (for me anyway) the last part is the trickiest. I had imagined things getting easier and easier as I finally got to lower doses, and that just wasn’t the case. I did much better when, after my second relapse under 10 mg, , my doc and I agreed that I would manage my dose using a slow taper schedule I found on this site, just keeping him informed - instead of having him direct every step. Rheumatologist I finally got in to see after waiting almost a year for appointment agrees. Down to 1 mg and feeling great so fingers crossed. I just had no idea getting off the prednisone could be so tricky. That drug was a lifesaver but it certainly has issues! I had no idea in the beginning.

@cyndip Which taper did you use, please?

Putting too much faith in the idea that in two years the pmr would go away gave me a somewhat frivolous attitude. That was in Jan of 2019. Since then, what I thought would be 'follow the taper schedule and be done', just did not happen.
The only 'handouts' at the Dr.'s office I received were on methotrexate and fosamax. Nothing about inflammation, exercise or diet.
In all this time I've only come across one person who also has pmr and his cardiologist got him off the prednisone before he was 'hooked' on it.