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Titration steroids using Tyenne but now at a stuck point
Polymyalgia Rheumatica (PMR) | Last Active: Feb 26 7:08am | Replies (17)Comment receiving replies
I am not taking a biologic. I've been taking prednisone for seven years. The last several months I have stayed at 3mg. I saw my rheumatologist last week and he thinks my adrenals should be working. I was told I could try alternating 3mg/2mg ( he does not believe in pill splitting). I started alternating 3mg/2.5mg. I'm feeling ok already at 2.5mg so next week I'm going to start alternating 2.5mg/2mg. We are not testing cortisol. I'll go back to 3mg if neeeded. In these last 7 years I have been told a few times I may need to stay on a low dose. I have not taken any other meds for pmr other than prednisone and Tylenol. Even Tylenol has elevated my AST/ALT.
I'm feeling like the pmr has 'burned out'. But maybe I'm destined to be on a forever low dose of prednisone. Time will tell.
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@pmrsuzie
"I saw my rheumatologist last week and he thinks my adrenals should be working."
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Saying your adrenals "should work" is entirely different than saying your adrenals "will work."
I was on 3 mg for a long time while I saw an endocrinologist because my cortisol level was too low to safely discontinue prednisone. When my cortisol level was adequate---my endocrinologist said I could "probably" discontinue prednisone. However, my endocrinologist "didn't know" and "couldn't predict" what would happen if and when I decided to stop taking prednisone.
The only thing that seemed "somewhat certain" was that Actemra controlled PMR "reasonably well." When I stopped taking Prednisone the first time ...something completely unexpected happened. About two weeks after I stopped Prednisone ... I needed 60 mg of prednisone again because of a flare of uveitis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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You won't know what will happen after prednisone is stopped. Hopefully it won't be an adrenal crisis. My flare of uveitis responded quickly to 60 mg of prednisone and I tapered off Prednisone again.
Everything about PMR and being treated with Prednisone is trial and error. I eventually got off prednisone a few months after the flare of uveitis but not until a different biologic was tried. The other biologic (Humira) didn't seem to work as well for PMR as Actemra did.
My rheumatologist let me decide what was best for me and staying on Prednisone was one of the options. I decided to give Actemra another chance because it got me off Prednisone for the first time in more than 12 years.
All I know is that Actemra didn't suppress my adrenal function which allowed me to taper off prednisone. Some people say that Actemra doesn't do anything to help secondary adrenal insufficiency. However, I would say it is what Actemra doesn't do that helped my adrenals to recover. Actemra didn't suppress my adrenal function all the while that PMR was controlled. Now I have been off Prednisone for more than 5 years.