I think I have PMR and I’m terrified

@martyn

Sounds sensible to me. I hope the plan works well for you.

There isn't any single correct way that works for everyone. There are many ways that are tried but research has shown there is no method of tapering off prednisone that works for everyone. The taper you do should be individualized to you.

@martyn That seems pretty aggressive to me. My taper was pretty similar to your plan, except I was on 15 and 12.5 for 2 weeks, and then on 10 for 4 weeks, and then taper 1 mg every 2 weeks down to 5. But the difference between us is that I had already been on Actemra for several months before I got to 15. So my PMR and GCA were under control by the Actemra, and I just needed to taper off of prednisone gradually to avoid adrenal and prednisone withdrawal problems. My rheumatologist only had me step down in either 2 or 4 week blocks.

Maybe your rheumatologist's plan will work ok. Hopefully you can taper slowly enough that you don't overshoot your lowest effective dose by a big margin and have a bad flare. I think you should plan on being on prednisone for at least a year or two, so you need to find lowest dose that controls your symptoms and stay there for an extended time.

People vary in how much discomfort they are willing to put up with. My symptoms were totally controlled, but that was important since I have GCA and PMR. Some people with PMR prefer a lower dose of prednisone and accept some level of continuing PMR symptoms.

It's good your doctor supports your cycling. Like I said, I was active all during my illness and treatment, and it made the experience much easier to bear.

@martyn
Don't worry about late replies. You get a lot of advice and support here and it's difficult to reply to everyone when you have so much going on with your health. It's overwhelming when you first get your diagnosis but you are on a journey that many of us are also on, and we have one common set of goals...be pain free, be meds free and return to normalcy. Don't ever forget that we are all at different stages but one in spirit.

Martyn, pls keep in mind that before you taper……best you want to be PAIN FREE for 1-2 weeks. Reminder, you don’t want to go “up”/backwards.

@boomerlib your time frame fits mine. Now 73 & am going for a taper of 1 alternating w/1.5 this coming week. Have been doing really slow tapers. I do feel a bit of the bilateral hip pain esp when sitting! So it reminds me to get up!
I do try to walk everyday. A lot of 2+ miles in morning then again 2-3 miles in evening. Mentally healthy for me.
I see rheumatoid guy in December to check lab numbers. Maybe I’ll be off pred by then. I am also on methotrexate & rheumatoid guy says typically one stays on it for 6 mo after ending prednisone! I want off that stuff too!

@kare1 My brother-in-law has been taking methotrexate 14 years to control his PMR. He has tried stopping it several times, and the PMR has always come back. He's happy with it because he's able to keep playing tennis. He's almost 78. He doesn't like needles, so he's not interested in a biologic.

@jeff97 ohhhh so what are the side effects of metho for him? Anything serious? I should google it.
My pride gets in my head about drugs but I’ll do what is necessary to keep moving!!
I did walk 2 miles just now. It’s hot in our Midwest & will get worse the coming week!

@kare1 He has never said much about side effects, but last year he developed fungal pneumonia. That was a difficult illness for him. It took a long time to get a diagnosis, because I don't think doctors see many cases of it now. An infectious disease specialist diagnosed it. He recovered ok after being treated with heavy doses of antibiotics. They had to discontinue the methotrexate while he was being treated, so he had to go back on prednisone during that time.

I live in the Raleigh area of NC. We've had a break from the heat for the past week or so, but the upcoming week will be hot and humid. I do my outdoor exercise mostly before sunrise.

Yea NC! (I moved from Charlotte to IN, crazy) but I will just go to Y inside to walk about. Keep on moving is important w/this chronic condition

And I’ll keep an eye out on methotrexate. Most folks on this site are doing the biologics now. My rheumatologist never mentioned them.

@martyn
Your body will let you know how sensible it is. If you have initial increase in pain at a decrease, give it a few days to see if it subsides. If it does, then you're okay. If it doesn't, then listen to your body.