I’m 71 yo longtime listener, first time caller, diagnosed 6 years ago. After 2 DSNS tapers ending w/ flares at the 2.5 mg point I’m wondering if I’ll be on 3 mg forever. That seems to be my sweet spot; stiffness, depression, insomnia, and gerd symptoms at 3 or 4 on a 10 scale but enough juice to get done what I need to get done and enjoy life. 2.5 mg seems like a borderline — but going to 2.0 tips me into an insupportable inflammatory level w/ stiff and aching knees, and the inevitable creeping up of unrelenting fatigue. I have a fairly active life with many objectives and I need my momentum.
My question: is it even possible to be at 3 mg pred forever?
Thanks in advance for any thoughts and experiences folks are willing to share.
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Possible to be on 3mg for ever?, certainly... likely?, who knows.
Your comment of -"I have a fairly active life with many objectives and I need my momentum" may answer why below 2.5mg is not enough, you are allowing symptoms to resurface.
As for depression, fatigue etc, that may be down to adrenals stuttering and not working at enough capacity to replenish reducing Pred dose...only time, a slow taper, and patience will address that. But you could request a test to check cortisol levels.
I would be incline to stay/return to 3mg for next few months, really look at lifestyle, forget about tapering - and then maybe try again using a slower tapering plan, and if necessary smaller steps, 0.25mg a time.
When/if your illness goes into remission you will get off Pred, if it doesn't, then a dose of 3mg is no great shakes to be on.
Hello, Dorset lady, I’m wondering how to taper at 0.25 increments? Cutting a 1 mg in half for 0.5 mg is dicey enough (no pun intended). The DSNS method doesn’t address that as far as I know. Thanks for considering….
Lots of people take more than that for their entire lives ...
Prof Dasgupta (UK GCA guru) told us a couple of years ago that he often keeps patients on 2-3mg long term because it avoids relapses. I take that as a tacit admission that PMR is a chronic disorder and may last a very long time. My rheumy here says he has a lot of patients on long term pred - but most are at low doses of pred, well under 5mg.
Thank you both! As a “long time listener” I was hoping you’d chime in. I feel greatly reassured. I’m up to 5 today and tomorrow to clear the inflammation, then 4 thru the weekend, then back to 3 till December. Always happy to hear any other experiences. Im very grateful for all those who share their hard won wisdom.
Oops, yo-yoing is not a good idea - two days and then down again, does not give time to clear out the build up of inflammation. How about 5mg for a week and then using DSNS plan a 0.5mg a drop .
If you are getting the deathly fatigue it may be caused by your adrenal glands. It may be worth talking to your doctor about having them tested. Don’t give up hope, most people do eventually come off steroids.
It was interesting to read your post, as it sounds like we've had a number of similar experiences. I am just "celebrating" my 6th year with PMR now at age 67 and am still working a full time job. I don't do anywhere near the physical work I used to do, as too much guaranteed problems over time. I've been very careful and sparing with reducing and haven't had a good hard flare for a few years now. Over the past few months I had settled in at 2 mg but was really having an issue with the deathly fatigue along with some pain issues if I did much of anything. I was focusing on the possibility of adrenal issues. Very frustrating and I guess I'm not the brightest light bulb as it finally hit me that I was likely too low on the prednisone dose. I nailed it with 8 mg for 4 days and have dropped back down to 4 mg. It's been a week and things are back to "normal".
Sorry to ramble before getting around to your original question. When I first got down to 3.5 mg of pred, my rheumy made the comment that he wouldn't have a problem with it if I had to be at 3 mg forever. He said he had a number of long term patients that were at that level or higher. It took me going through 4 rheumies but this one understands that it isn't a relentless push to get to zero pred. It's about quality of life and he also "gets it" that I'm a rare case that's still employed while dealing with PMR. Best wishes to you!
Please do ‘ramble on’! I’m so glad you responded at length, Raven! The 3 times I’ve flared, it took me weeks before I realized: wait a minute, I think I’m too low on pred. A year ago when I tried to go from 2 mg to 1.5 mg, it took me 3 days to put together a pot of soup what with all the procrastination. Finally the penny ‘dropped’ — or more accurately, floated downward — and I realized it was the taper. The show must go on, right? I really want to be off pred first because of gerd — I took ppi’s for a bit and managed to wean myself off and have 0 desire to go back. And then, osteoporosis: I don’t want to go near bone builders and have kept my BMD scores at the osteopenia border for 15 years through diet, supplements, and weight bearing exercise. My rheumatologist also said she has a bunch of patients at ‘minuscule’ levels of prednisone indefinitely. The docs don’t understand why but they’re beginning to just accept it. As long as I can keep gerd, osteoporosis, and the dreaded fatigue at bay, I can accept it too. Thanks again, your fulsome reply was so reassuring.
"The docs don’t understand why but they’re beginning to just accept it."
It's because the a/i part of PMR DOESN'T just disappear as they are so convinced. It is a chronic low level disease which can be managed very well on a low dose of pred for most - just come out and admit it instead of prevaricating ...
I'm in a similar position, 75 years old and now exactly 3 years since PMR diagnosis. I have strictly followed the DSNS reducing regime carefully and I've been very fortunate to have had a smooth ride until I made the drop from 3mg to 2.5mg.
The taper period went well but after a full week on the new dose I was very aware of increasing pain and stiffness in my thighs, going upstairs was a real chore, and an increase in fatigue. After another week I knocked it on the head and went back to 3mg.
I must admit it's heartening to read that some insightful rheumatologists keep their PMR patients on a low maintenance dose for some months or longer before attempting further dose reduction. I'm one of the lucky ones, I fully realise that, and we all respond to this disease in different ways but I'm happy that my GP leaves me to manage this and the word "rheumatologist" has never crossed her lips.
I was a patient of Professor Dasgupta and he told me he didn’t think I’d come off pred totally and was okay with me staying on 3 mg to prevent future flares - just as Pro says.
My rheumatologist says that roughly one-third of her PMR patients get off prednisone and one-third stay on a low dose. (The other third end up with a change in diagnosis because they get no relief with 30mg of prednisone.)
this is awesome, D2C. Thanks so much. I’d been trying to get an endocrinologist consult but then my beloved GP retired and it slipped to the back burner.
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