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How to Slowly and Safely Taper Off Prednisone but ... no set rules.
Polymyalgia Rheumatica (PMR) | Last Active: 5 days ago | Replies (70)Comment receiving replies
Regarding the taper, Actemra supports a faster taper, especially if your inflammation is primary due to interleukin-6, which Actemra and Kevzara block.
Also, my understanding is that the symptoms you list, like fatigue, are a sign that your adrenals are either not waking up (not producing cortisol), or else not producing enough cortisol to compensate for the lower prednisone dose. Here is what I just got from a google search:
"Experiencing increased energy levels can be a positive sign of recovery from secondary adrenal insufficiency, as it indicates that your body is producing more cortisol and regaining its normal hormonal balance, which is often characterized by fatigue as a primary symptom; however, it's crucial to consult your doctor to confirm this and monitor your progress through blood tests."
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"Regarding the taper, Actemra supports a faster taper, especially if your inflammation is primary due to interleukin-6, which Actemra and Kevzara block."
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I think this is true up until the point when the adrenals need to produce more cortisol. After starting Actemra, I was able to taper my prednisone dose by 1 mg per week at one stage.
At first, I tapered by 1 mg per month from 10 mg to 7 mg. I didn't have any instructions so I wasn't sure what to do. I didn't feel any different on 7 mg except for not having a flare which usually happened whenever I got down to 7 mg. Actemra was probably working but I wasn't sure.
At 7 mg I decided to put Actemra to a test and I started tapering by 1 mg per week. I thought for sure I would relapse but nothing noteworthy happened.
When I was on 3 mg I felt insecure. I reminded my PCP that an endocrinologist wanted to check my cortisol level IF I could ever get to 3 mg of prednisone. The assumption was my cortisol level would be low after 12 years on prednisone.
My PCP checked my cortisol level and it was low but I didn't have any noteworthy symptom change. My overwhelming fatigue was already a characteristic of how I always felt at this stage. I was told in no uncertain terms that I should NOT taper my Prednisone dose any lower than 3 mg until I could be seen again by the endocrinologist. That visit happened 2-3 months later.
The endocrinologist verified a low cortisol level but she was "encouraged" that I had a cortisol level. My cortisol level was not as bad as she expected it would be. We had a long discussion about adrenal insufficiency. I was given the option of switching to hydrocortisone or staying on Prednisone. I elected to stay on 3 mg of prednisone.
My next endocrine visit was 3 months later. I thought a Synacthen test would be done at the next visit. I "experimented" with my Prednisone dose in the interim just to see how I would feel being off prednisone. I did some things that I would rather not suggest that anyone should try.
At my next endocrine visit my cortisol level was rechecked. It was "adequate" and my endocrinologist said it "might be safe" to discontinue prednisone. A Synacthen test was going to be done if I was symptomatic when I was off prednisone.
My first attempt to discontinue Prednisone was a huge setback. My ophthalmologist restarted me on 60 mg of Prednisone again. Thing were complicated during the year that followed.
My second attempt at stopping Prednisone was about a year later. I was successful the second time. My overwhelming fatigue didn't dissipate until after I got off Prednisone the second time.