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Glucocorticoid-induced Adrenal Insufficiency
Polymyalgia Rheumatica (PMR) | Last Active: 14 hours ago | Replies (12)Comment receiving replies
@dadcue I just found this post. I saw the endocrinology guidelines recently and found them helpful, putting it somewhat in perspective. I was diagnosed with GCA with large vessel involvement in March 2026, put on 60 mg prednisone daily and started weekly injections of Actemra in April 2026. I quickly tapered off prednisone to 4 mg by mid-August. I was at 4 mg for 2 weeks and doing fine. When I dropped to 3 mg as prescribed by my rheumatologist, I was extremely tired and had transient headaches, spasm like, that lasted usually only a few minutes. After 2 weeks of fatigue at 3 mg, rheumatology NP put me back to 4 mg for 1 week (I felt much better after a day at 4 mg) and adjusted the taper to 0.5 mg decrease per week. I decreased to 3.5 mg a few days ago and have had extreme fatigue, worse than when I was on 3 mg. After reading your tapering history, it makes me wonder whether I should just deal with the fatigue and continue on the prescribed tapering schedule to get off prednisone as soon as possible. My rheumatologist told me that my #1 goal is to get off prednisone, since my GCA seems to be in remission. He does not believe that I have adrenal insufficiency and my symptoms are due to the prednisone taper. The NP agreed separately. It's hard to know what is tolerable and what isn't as I taper the prednisone. Any thoughts?
Replies to "@dadcue I just found this post. I saw the endocrinology guidelines recently and found them helpful,..."
@purplebike You might try tapering to 3.5 on day one, then 4.0 on day two, then 3.5 on day three, then 4.0 on day four. Keep this up for 10 to 14 days. If you are pain free then you can try moving to 3.5 or alternately you can do 3.5 for two days, the 4.0 for one day, then 3.5 for two days, then 4.0 for one day. Keeping this up for 10-14 days before going to 3.5mg prednisone.
Getting below 4.0mg is very much an individual journey and what works fr you is the right path for you.
I am now using the rule that I must be pain free and my inflammatory markers must be in the green zone before I will taper down any. If either of these is not true I will stay at my current dose for another month and test my inflammatory markers again. I have had PMR Dx since March 2020 and GCA since Oct 2025.
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@purplebike
I'm impressed that Actemra was started so soon. To be started on 60 mg of prednisone in March 2026 for newly diagnosed GCA with Actemra started in April 2026 is fantastic in my opinion. To have tapered down by 4 mg by August 2026 is truly amazing! You did in 4 months which used to take years.
Prednisone induced adrenal insufficiency is a side effect from "long term" use. In some cases the adrenals are permanently suppressed. I believe doctors think of adrenal insufficiency in terms of being a permanent condition. Maybe your doctor doesn't believe you have "permanent" adrenal insufficiency but your adrenals might be temporarily suppressed. In that case, your symptoms are probably caused by the fast prednisone taper which should improve as your dose is decreased more slowly.
I don't think anyone knows if your prednisone taper is "too fast" or "too slow" since you are also taking Actemra. I think it is important to taper off Prednisone as soon as possible. That is where it gets tricky because nobody knows how much prednisone is too much or not enough. It is also difficult to know when it becomes "too long" to be on prednisone.
As far as what symptoms are tolerable is based solely on what is tolerable for you. However, I think you have to be able to tolerate "some fatigue" and "some discomfort" to get to zero prednisone.