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← Return to low dose (1-2mg) prednisone indefinitely
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low dose (1-2mg) prednisone indefinitely
Polymyalgia Rheumatica (PMR) | Last Active: 15 hours ago | Replies (14)Comment receiving replies
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
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Life goes on
Replies to "I saw my rheumatologist last week. The decision is mine to stay at 2mg or start..."
@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
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@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.