Another year on, dealing with PMR after nine years.

[DAN38655]

I am posting a copy of a reply I made to another poster's thread this morning, after having received a request to do so.

Easy enough to cut, paste and edit slightly!

I haven't posted a reply here for perhaps a year, but just to report back on my progress and also to address the OP's issue, allow me to give you the latest on how I have been dealing with PMR after nine years.

I take 1mg in the AM and 1mg at 6pm.

If (and only if) I am having noticeable symptoms mid-day, I take 1mg with lunch.

My symptoms are moderate, but include fatigue as well as pain in my feet, hands and hip joint areas.

I have noted great seasonal variability some years, and last year I actually went from February through July on zero pred, though with the help of my going out the door every morning for two hours of bike riding, running or walking.

My symptoms came back in August during a heat wave and also when I started doing some automotive work in lieu of my morning exercise. I maintained a very light, stable body weight through it all and to this day.

My rheumy has always been ok with my setting my own truly minimal dosage in real time in accordance with my symptoms, and I am allowed to refill my own 300mg prescription twice before again contacting them for a new 300x1mg prescription.

Also, for what it's worth, I'm male, in my early sixties and remain quite active. My original dosage from early 2014 was 15mg/day, and which was quite effective until I had too-quickly tapered below 10mg. It took me 2-3 years to ever test a dosage as low as 3mg. Again though, there has also been a lot of seasonal variability to my dosage requirement (usually I do much better in winter).

The weather here in California has been particularly wet this winter, hence I am still playing with 3mg of prednisone most days. I expect things to get better quickly with my increased outdoor time, and will again be trying to get past the heat of August without any pred if I can maintain my activity level early each day.

I will check in again in a few months.

Editing here, to add that I am male, in my early sixties.

[DorsetLady PMRGCAuk volunteer]

Thanks for this update…

[PMRpro Ambassador]

Thank you!!!

[Jackoh]

Really helps to see your pattern of progress. Thank you. 💐

[Noosat]

Thanks for our post. I live in Central(hill country Texas, so well aware of your weather. After 4 years am taking 3mg in morning. I am older than you so attribute my many pains to other causes, but good to hear your story.

[pmr_nikola]

Sounds like someone I "met" on sister site talking about PMR - He was also biker as I am. He motivated me to get back to exercise, which I still do - MTB and swimming.

Could it be that you are the same guy?

BTW, after 7 years on pred, I took last dose in mid December. Some struggle with fatigue but manageable.

[PMRpro Ambassador in reply to pmr_nikola]

If it is the patient.info site - very likely!

[pmr_nikola in reply to PMRpro]

yes it was

[PMRpro Ambassador in reply to pmr_nikola]

I often wonder where the others who didn't come here are now,

[DAN38655 in reply to pmr_nikola]

Yes, I'm from the Patient site many years ago!

Glad to hear that you are testing Zero at this time, and also very glad to hear that you are able and have been motivated to doing those endurance activities!

I'm hoping to get back to a quite rigorous exercise routine (as my activities have been somewhat limited by a severe winter) and re-visit Club Zero again this year. I've seen some breaks in the weather lately, but it even snowed briefly again today, grrrr! (and Brrrr!).

[pmr_nikola in reply to DAN38655]

I was hanging at 2-3mg for maybe3 years before I could drop below 2mg. Everyone is different, but at this low dose, who cares how long it takes. I am not sure if endurance exercise prolongs PMR, but I am sure it makes the symptoms less unpleasant. I try to do workout every second day (2 bike rides and 1 swim each week). If I miss workout for more then 3 days, I can feel the change in my wellness.

I have tempered down my rides and limited them to usually less then 90 min/ride. and also slow down too. Reason is simple, it is good enough to keep me in shape and I don't plan any more racing at my age ( closing to mid 70's). Now it is just for fun.