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low dose (1-2mg) prednisone indefinitely
This may be where I'm headed.
I last saw the rheumatologist in Feb and was at 3 mg. I was instructed to alternate between 3 and 2mg. My next appt is in Aug. I started that plan but gave up on that taper and alternated 3 and 2.5mg and then 2.5 and 2mg. It was a real struggle getting to 2mg. Tapering has seemed to aggravate my Meniere's symptoms along with hip pain. I'm staying at 2mg til I see him. I guess there is some logic to the 3-2 alternating???? There does not really seem to be a science to tapering imo. How many pmr patients actually end up on low dose (1-2mg) prednisone indefinitely? Saw my pcp this week and she said "just stay at 2 mg". I started this in 2019.
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I saw my rheumatologist last week. The decision is mine to stay at 2mg or start alternating between 2 and 1mg. His opinion is my longstanding pmr is inactive and I do not have GCA related symptoms. I have since messaged him asking about studies and statistics on pmr returning post prednisone and his comment was that it is possible to taper off prednisone but the chances of pmr returning are fairly high.
So how lucky do I feel? Not very. If pmr came back and hit me like it did the first time, I'll be in a world of hurt. I am tapering slower than he suggested. I'll attempt getting to 1mg in the next few months.
I have had eye related issues - a subconjunctival bleed and a retinal (ocular) migraine. I have seen an ophthalmologist and seeing the retinal dystrophy specialist in October.
I have a few more PT sessions scheduled for hip arthritis. Proper exercising is important.
Ob-la-di, ob-la-da, brah
Life goes on
la - la -la - la
Life goes on
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4 Reactions@pmrsuzie
I don't feel that lucky either because I spent about half of my life (35 years) taking prednisone.
Prednisone did some harm to me but it spared me a lot of pain. I guess the pros and cons of prednisone balanced out. I'm happy that I don't take prednisone anymore but it still calls to me some days. I never get harassed anymore about my prednisone dose. I needed a lot more than 2 mg but my doctor said if my dose was under 5 mg he wouldn't have cared as much.
There is something nice about telling my doctors that I haven't needed any prednisone for more than 5 years as if that is some kind of an accomplishment. I'm amazed that none of my doctors seem to care that I have done a monthly Actemra infusion for the last 4-5 years. I don't want to stop doing Actemra infusions for fear that I would have too much pain again. I'm not "pain free" but I have been "prednisone free" for a long time.
I'm still being treated for PMR. My doctors refer to everything that has happened to me over the last 40 years as one big "autoimmune problem." I still have some other types of medical problems. Not much has changed except that I don't take prednisone anymore.
My life goes on too but it will end someday and I will probably still be on Actemra. The cost of prednisone itself would be less expensive but I'm not so sure it is less expensive in terms of my overall health care costs.
There was a time when I was on prednisone when I didn't think I would live to be 70. Now I'm 72 and maybe 80 is within reach if Actemra or something else doesn't kill me sooner. I think 76 is the average life expectancy of a male in the USA so that is my current goal. I used to think I was better than average but now I'm fine with just being average.
My rheumatologist said I was an "outlier" in terms of my long term prednisone use---35 years in total but only 12 years to treat PMR. My long term prednisone use wasn't an accomplishment that I'm proud of. I didn't think I would ever get off prednisone so you never know!
My medical record now says "decades of prednisone" as if prednisone was my primary health problem. The worst part of my PMR journey was when someone encouraged me to take prednisone for the rest of my life because it was the "only option" for PMR. The person also undermined my relationship with my doctor because they claimed that my doctor was stupid and didn't know how to treat PMR ---not to mention that doctors in the USA were "breaking the rules" for treating PMR/GCA with biologics.
I'm just happy that the next generation might have more alternatives to prednisone. Maybe something better than a biologic will be found eventually. I'm glad that my rheumatologist wanted to "find a way" to get me off prednisone and finally succeeded.
@pmrsuzie I am at 2 mg as well.Started prednisone December ,2025. I am feeling some discomfort but not necessarily PMR symptoms.I have a good family Dr but not a rheumatologist . I will proceed with caution