Path to 0mg and acceptable discomfort?

Posted by noti @noti, 3 days ago

I’ve been tapering down from 15 mg since last April. I’ve been tapering by 1 mg a month since 10 mg. The taper from 4 to 3 was more difficult than previous ones, with a recurrence of PMR style spasms at the beginning of the taper, so I took a few extra weeks. I took my chances and went to 2 mg as soon as I felt ready, hoping that my adrenals would kick in. It’s only been three days, so it’s too soon to tell, but I feel generally OK, during the day with just more arm soreness for longer in the morning, and more stiffness in my recalcitrant upper left arm. Less neck stiffness, less weird itching under my right shoulder blade. I still have a lot of annoying background noise discomfort towards the end of the day, but since that goes away while I sleep, I don’t worry about it. I would say I’ve never been 100% discomfort free since much higher doses. But for me this all feels pretty acceptable.
I wonder if I’m supposed to feel completely fine if and when I get to zero? Or should I just be happy feeling my age, which is still 70, but not for long.
How do other people navigate their paths to 0?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

John, Volunteer Mentor | @johnbishop | 2 days ago

Hi @noti, Unfortunately I don't think it's the same for everyone and can be difficult for some. For me it took 3 and half years to zero the first time around with PMR and six years later it took me 1 and half years to zero with prednisone. Both times I started at 20 mg. @dadcue started the following discussion with a couple of good videos that you might find helpful:

-- Prednisone love/hate support group: https://connect.mayoclinic.org/discussion/prednisone-lovehate-support-group/

You can also scan through the list of discussions and comments on tapering off of prednisone to see the experiences of other members - https://connect.mayoclinic.org/search/?search=tapering+off+prednisone

noti | @noti | 2 days ago

In reply to @johnbishop "Hi @noti, Unfortunately I don't think it's the same for everyone and can be difficult for..." + (show)

Maybe I should’ve titled this “ how do you know when you’re done?“ but I can check out those other posts.

John, Volunteer Mentor | @johnbishop | 2 days ago

In reply to @noti "Maybe I should’ve titled this “ how do you know when you’re done?“ but I can..." + (show)

Try this discussion - How do I know my PMR is in remission?: https://connect.mayoclinic.org/discussion/pmr-8/

DadCue | @dadcue | 2 days ago

"I wonder if I’m supposed to feel completely fine if and when I get to zero? Or should I just be happy feeling my age, which is still 70, but not for long. How do other people navigate their paths to 0?"
---------------------------------
Very good questions. I'm 70 too... I have 7 more months until I'm 71. I'm very happy feeling my chronological age. I don't expect to feel completely fine and certainly not pain free.

I count my blessings because some people don't make it to 70. There was a time during the peak of PMR and taking prednisone when I didn't think I would make it to 70 either.

People often describe how PMR feels by saying, ''I feel like I have suddenly aged." That is an apt description. PMR struck me when I was 52. By the time I was 60, I felt like I was 150 and rigor mortis was setting in.

I retired for medical reasons at 62. Improving my health is now my full time job. I had a major breakthrough at 65 when I was able to get off Prednisone. Since then, my PCP has deprescribed about 10 additional medications that were mainly treating Prednisone side effects.

I still have an unfinished goal of losing more weight but otherwise I'm no worse for wear considering I'm 70 years old. I think I might get to 80 or 90 but 100 might be pushing it.

I still have PMR and some other autoimmune conditions but I'm happy to be off Prednisone. My biggest dilemma now is the thought of additional surgeries to help with some lingering pain. At least the spine surgeon is no longer saying I'm a poor surgical risk because of my decades of Prednisone use. The surgeon said that 10 years ago when I was 60. Now the surgeon says I can do the surgery whenever I'm ready. Presently, pain isn't much of an issue for me and not enough to undergo major spine surgery.

noti | @noti | 2 days ago

In reply to @dadcue ""I wonder if I’m supposed to feel completely fine if and when I get to zero?..." + (show)

Thanks DadCue. You’ve been through a lot more than most. You’ve certainly helped to give me some perspective on things. I came down with PMR at 69, probably around December 2023, but I was too determined to fix it myself with acupuncture, tai chi, exercise, etc. so didn’t get a diagnosis till last April. I was a freelance artist for at least 40 years. But it felt like I was murdering myself, sitting at the computer, and ended up stopping work a couple of months short of my 70th birthday. It seemed more important to focus on my health. Anyway, the tai chi, exercise, and a better acupuncturist have all come in handy to support my treatment.
I’m glad you now have the option to get your surgery when you need it.

usmwp111 | @usmwp111 | 2 days ago

I’m a 71 year old who has just finished my journey from 15 mg to 0 last week. I would classify myself as in a situation of ‘manageable’ aches and pains, most of which is in my shoulders in the mornings. I’ve had some flares which resolve themselves after a day of rest (or sometimes after a few hours rest). After talking to my Rheumatologist, we agreed that
I would manage the pain with over the counter meds. It seems that each day there is a small improvement, that I take as a victory. My motivation is that I do not want to go back on Prednisone. As one person indicated it seems no two PMR journeys are the same, but with me as long as I see ‘baby-step, improvements, I will deal with the aches and pains. I wish you all the best!

tuckerp | @tuckerp | 2 days ago

In reply to @noti "Thanks DadCue. You’ve been through a lot more than most. You’ve certainly helped to give me..." + (show)

I would keep up the exercise and anything that makes you feel better. Spend more time trying to keep active. It is possible to get off the prednisone and sort of burn out the PMR. You will continue to have some background noise as you go to zero. It seems our HPA axis has a bit of adrenal fatigue. Most everyone says they wonder if its just age related. But it will get better. Its not the same noise as when PMR was active. It took about 6 months for me to feel a little normal and now 2 years later I still have the background noise. I will be 73 in a couple of months. I took this transition period to have everything checked. Hormones etc. I also found the losartan for prednisone induced blood pressure was causing some fatigue. Many find that the PMR / prednisone has caused other issues to pop up. So dont dismiss anything concerning. We are to young to check out early.

noti | @noti | 2 days ago

In reply to @tuckerp "I would keep up the exercise and anything that makes you feel better. Spend more time..." + (show)

Thanks for the good advice. That gives me more confidence to do what I've been doing, which has been to ride things out until they get better, for the most part. Fortunately that has worked , as far as I can tell. The main issue that has popped up for me has been high ocular pressure. I won't know for sure if it's glaucoma till I get off the prednisone, and pause the eye drops to see what happens. I also have some early stage cataracts but the doctor thinks it's age related. I doubt that my new PCP will order any tests till my yearly exam in May, unless there are some symptoms that require them.