Plateau ?

Posted by pdxmac @pdxmac, Oct 21 1:55pm

At the 26 month mark since my diagnosis, I certainly know what a flare is and I'm not having one. But I do have a dilemma.
I'm taking Methotrexate and steroids but couldn't get below 10mg until I started Actemra at the end of July. Once I started that I noticed immediate improvement and was easily tapering by 0.5 mg every week. I was down to 6.5 mg at the beginning of October and could almost forget I that I had PMR. Then I had a couple of triggers: too much stimulus around my 70th birthday celebrations and a flu shot within one week. I went back up to 7mg, thinking I just needed a brief reset, but I continue to be VERY tired and am generally stiff all day. Despite these maladies I can do pretty much what I want to, but I don't feel great like I did before. So, wise people, do I stay at 7 for as long as it takes to feel great or do I dare start tapering again?

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Mike | @dadcue | Oct 21 3:26pm

I don't know what would be the best. When I started Actemra, I hit a plateau at 3 mg of Prednisone. I had a low cortisol level so an endocrinologist instructed me to stay on 3 mg to allow time for my adrenal function to improve. I stayed on 3 mg for 6 months before for my cortisol level started to improve.

Prior to starting Actemra, I needed 10 mg to feel well but I couldn't taper any lower than 7 mg without a flare. The same endocrinologist said there was nothing she could do if I still needed that much Prednisone. She implied that I had to be on 3 mg or less of Prednisone for my adrenals to get a signal to ramp up the production of cortisol. I got the impression that 7 mg was too much Prednisone for my adrenals to get the signal.

Overwhelming fatigue was my primary symptom of a low cortisol level. My blood pressure was labile because I would have frequent dizzy spells with momentary black out spells. I felt like I needed to sit down or otherwise I would fall down but I never actually fell down.

Actemra may help you reduce your Prednisone dose. Unfortunately, you need to maintain a very low dose of prednisone for your adrenal function to improve.