← Return to 2 year struggle to get off prednisone still hard to get from 3 to 2mg

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@yogabonnie

I am coming up to 8years trying to get off!!! always get down to 1.5 then flare and go up to 5 for a week and quickly back to 2.5 then try again and again and again. slowly slowly. nothing works. now just at 2.5 and dealing with lots of morning pain. But do NOT want to go up again. good luck!!! Hope your taper is successful. any tips would be welcomed.

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Replies to "I am coming up to 8years trying to get off!!! always get down to 1.5 then..."

I feel for you I have struggled on 2mg but just gritting my teeth as I want to be off it wish I had some tips to make it easier but I haven’t
I think that’s what I have found so very hard about prednisone that if you have a hard time with tapering that’s just the way it is if I had known about the possibility of changing to hydrocortisone earlier than I did I would have tried that
I do wish you well I will go down to 1mg at end of May and expect to be sore nauseous and have headaches but will see the end in sight !

I was on Prednisone for more than 12 years. I wasn't able to get much below 10 mg. My absolute lowest dose was about 7 mg but that caused my symptoms to return. I was informed that being on Prednisone for such a long time was going to make tapering off Prednisone a difficult challenge. It won't make any difference how you taper if your adrenals don't start producing more cortisol.

When I tapered off Prednisone, my endocrinologist said I needed to stay on a prednisone dose of 3 mg for "as long as it takes" for my adrenals to produce more cortisol. I was told not to attempt to taper any lower than 3 mg until my cortisol level improved. In total, it took me over a year until my cortisol level was called "adequate" after I could stay on a 3 mg dose of Prednisone.

Corticosteroids, like Prednisone, are synthetic versions of the hormone cortisol that the adrenals produce. I called Prednisone a "cheap imitation of cortisol." You have to have more of the cortisol that your adrenals produce or you need to stay on Prednisone.

It would have been physically impossible for me to stay on 3 mg of Prednisone for a long time. I commend your continued efforts. I didn't think of it as my personal failure. The fact was ... Prednisone suppressed my adrenal function so it was physically impossible for me to taper off Prednisone until my cortisol level improved.

Good luck with your continued efforts. I had an easier time tapering off Prednisone when I was on Actemra. This biologic didn't suppress my adrenal function and effectively controlled my inflammation. After I was able to stay on 3 mg for an extended period of time, my cortisol level improved and was "adequate" My endocrinologist said I could simply stop taking Prednisone ... no tapering was needed. I did a fast taper because my endocrinologist said I could discontinue prednisone when I was ready.

How long you need to stay on 3 mg varies from person to person. My rhematologist said he didn't care if I needed to stay on 3 mg for the rest of my life. At that dose, the side effects of Prednisone are considered to be minimal. I was ecstatic and so was my rheumatologist that I was able to discontinue Prednisone.

My doctor tells me that some people have to stay on a low dose of prednisone. There is a test to find out how much cortisol the body is producing.