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I have been on 5mg Prednisone for a long time and going smoothly however this morning back came the dreaded stiffness in the hips and buttocks. I’m going to “suggest” to the Dr I should try Tynelol instead of upping the dose of Prednisone. What is everyone’s thoughts?
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@aussiedogmom glad to hear that Kevzara is working so well. Lots of good reports about it. But for all of us it does remain very important to try to distinguish between adrenal insufficiency or PMR pain when reaching the low doses. Simply because while PMR is very painful, adrenal insufficiency is dangerous. There are tests that can tell whether the adrenal glands are starting to wake up again after their prednisone sleep. My understanding is that if they - unfortunately - don’t wake-up then prednisone can’t be reduce past a certain low level maintenance dose.
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My first line of defense with discomfort at lower doses is Tylenol for Arthritis……it worked for me, Rehumy recommended
@tweetypie13 Yes, I use paracetamol as well for tampering withdrawal pain and DOMS which I suffer from a lot. It's effective for non-PMR pain, and at the moment can't even get close to pred doses where adrenal insufficiency could happen. Unfortunately, if adrenal insufficiency does occur, paracetamol won't help much as an artificial cortisol supplement is required as it is no longer just pain management which is an issue. As people are mostly still on pred, then treatment can involve increasing the dose, but sometimes hydrocortisone is substituted.
Once you get to a low level of pred, it can become difficult to distinguish between PMR inflammatory pain, DOMS (if you are relatively active), or adrenal insufficiency when it starts to occur.
"My understanding is that if they - unfortunately - don’t wake-up then prednisone can’t be reduce past a certain low level maintenance dose."
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That was my understanding also.
My experience with Acterma was as follows:
In 4 months, I quickly tapered from 10mg to 3mg after Actemra was started. When I reached 3 mg ... I had a vague sense that things weren't well along with pain that was similar to PMR pain.
When my cortisol level was checked and found to be low --- I was told to stay on 3 mg and not taper any lower. I had to remain on 3 mg of Prednisone for 6 months waiting for my cortisol level to improve. Since I was treated with prednisone for 12+ years, an endocrinologist wasn't overly optimistic that my cortisol level would improve.
Even when an endocrinologist said it "might be safe" to discontinue Prednisone, I was also told to restart Prednisone again "for any reason if I felt the need."
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I know of a few people who have been told similar instructions to stay on a sm maintenance dose and self medicate as needed. I do not appear to have an issue with the adrenals etc..