Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

@britton62 I started prednisone at 15 mg last November. My primary doctor wanted me off pretty quickly because I also have diabetes. So we tried for 4 weeks and stopped. Not good. Resumed at 20 and saw rheumatologist. I started tapering as soon as the pain was all but gone. By 1 mg every 2 weeks. Came off 3 weeks ago today. Every decrease caused a slight flare for a week then eased before the next taper. Similar this final dose. First week of, second week slight flare, 3rd week questioning my decision to get off. Stiffness, spasms, pain seem to be creeping in. Causing more sleep issues, fatigue, migraines. I really want to just push through. I cannot afford to stay on prednisone. If I get return of the full sx I’ll start other Kevzara or methyltrexate. Anyone on those medications? Hope you have smooth sailing!

@potterywoman My understanding is that the pro-inflammatory cytokine (?) levels, which rise in the morning, often dissipate as the day goes on .

I'm experiencing this phenomenon as I write, in fact. I'm currently at 10 mg, trying to establish my Lowest Effective Dose. 10 mg has been a rollercoaster: some days zero stiffness/achiness, some days all over symptoms. Today, I took my pred at 3:45 AM, and had zero symptoms--until about noon, when the unmistakable upper-arm PMR aches set in. At 4 PMish, it started to go away again, and is now pretty much gone again.

@britton62
I discussed 0.5mg drops with my rheumatologist and that's what I started once I reached 5mg. I just halved the time at each dose so I'm still tapering within the same time frame

@cj762 I have just recently been diagnosed and the same thing is happening to me. I have always been a morning person and find this transition to an afternoon person hard.

Thank you so much for moderating this group. I have found very valuable tidbits of information that relate directly to my circumstances, and have also found a group of folks that can share and support each other. Again, thank you.

I now find myself at a junction I haven't found a thread for... getting the SARS-2 Covid virus (is that the latest name for covid?) while also dealing with PMR.

I'm 73 and have been on a tapering dose of prednisone for three years - currently taking 2.5 mg or 1.25 mg on alternating days. I also take blood pressure medicine (enalapril, 20 mg/day). This covid episode was brought into my life by a well meaning friend who had no idea he'd been infected until he'd passed it on to me. It's been a very rough nine days so far, but aside from the yuck that you get with covid, my issue deals with my very low-dose prednisone not being able to keep up with the cortisol my body has needed during this illness. That, and how the enalapril has dropped my blood pressure into a very dangerous range (77/66, pulse 89) putting me at risk of cortisol crisis. Until this week, I had no idea what that even was.

After a chat with my rheumatologist ("stay the course!") and some fairly harsh admonitions from my cardiologist ("suspend the enalapril at once, and don't resume until I see you in my office and give you the okay!"), I realize that I cannot rely blindly on their counsel. My cardiologist thought I ought to bump the prednisone back to 5 or 10 mg daily until I got over the covid. You can imagine how I felt after hearing yet another reason to delay the taper...

Anyway, I just wanted to vent a little and ask if anyone else is dealing with covid while on a tapering dose of prednisone for PMR? If so, what are you doing to address your symptoms? If you're getting contradictory advice from the M.D.s in your sphere, how do you decide who to listen to? I've been really hesitant to ask AI because of all of the misinformation floating around.

Thanks for reading...

@rugi53
Did your cardiologist suggest you bump up your prednisone dose or suggest you speak with your rheumatologist about bumping up your prednisone dose? The specialists that I see may comment on things outside their field but they always defer to the field specialist.

@kjoed53 He did say to speak to my rheumatologist again (I now have an appointment with each on Monday) but he (cardio) appeared to be more concerned with avoiding a cortisol crisis now rather than to wait until Monday. I hope I'm being clear and responding accurately, but to be accurate my mind is fuzzy more often than clear since this episode began.

@rugi53
Sometimes prednisone is a necessary evil for a good and positive outcome. He was right to be concerned if that was his concern. Try to bring someone with you to your Monday appointments since these will be important and you need to be clear on the discussions. Being fuzzy and driving a car may not be in your best interest either. Good luck Monday and let us know that you're okay.

I have had PMR for 2 yrs. Am on Infusions with Actemra. It helps.
I have muscle aches in thighs.
Are there others that have same problem. ? Trina

@trina24 - Another member @19okie2 mentioned thigh pain and Actemra infusions this discusion - On Actemra, experience slight rise in CRP: https://connect.mayoclinic.org/discussion/on-actemra-experience-slight-rise-in-crp/