1. < Polymyalgia Rheumatica (PMR)
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Smallest amount of prednisone for adrenal glands to work again?

Posted by grandmap @grandmap, 6 days ago

I was diagnosed with PMR in May 2025. After 7 months of being on prednisone, I was able to taper off completely, but then had a flare on 12/15 after being completely off of prednisone one week. My rheumatologist had me go back on 20 mg and taper down again, 5mg every 3 days. I'm completely off now, but am having major issues with adrenal insufficiency, especially fatigue and night sweats. Is there a minimal amount of prednisone that I can take to alleviate these symptoms, while still allowing my adrenal glands to kick back in naturally in the next 6-12 months?

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jabrown0407 | @jabrown0407 | 3 days ago
In reply to @laura1970 "If you were sick and needed stress dose steroids in the hospital the typical treatment is..." + (show)
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If you were sick and needed stress dose steroids in the hospital the typical treatment is hydrocortisone 100 mg 3 times a day. If you are well and needed regular adrenal replacement typically hydrocortisone 15-30 mg 2 or three times a day. Prednisone equivalent 2-5 mg per day. Ask your doc about dividing the dose into 2 or three times a day, for example maybe 1 mg three times per day for the first few days.

But definitely do what your doctor recommends, my thoughts are just hypothetical.

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@laura1970 Spacing out your prednisone does not mimic what your adrenal glands do naturally. Adrenal gland release based on the circadian pattern with the highest being between 6am and 8am. My understanding that spacing them out can actually encourage adrenal suppression, so it is definitely something that should be discussed with your doctor before doing it. I am sure there are some good reasons to split a dose, I am not a doctor so I don't know what they might be.

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jabrown0407 | @jabrown0407 | 3 days ago
In reply to @dadcue "I think I understand what you are saying. If I don't ... keep posting so I..." + (show)
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I think I understand what you are saying. If I don't ... keep posting so I can understand better.

I actually thought I would be fine taking Prednisone for the rest of my life when Actemra was tried. I didn't think Actemra would work and I only tried it because I made a semi commitment to my rheumatologist before he sought the authorization to treat me with Actemra.

I went into Actemra thinking I would get the "inevitable flare" over and done so I could take more Prednisone again. I couldn't function on anything less than 7 mg and 10 mg was better. If you can manage on 5 mg ... that is better than I could do.

Now ... I'm just very grateful to be off Prednisone ... that's all. If Actemra didn't work for me, I would still be taking Prednisone. Actually ... Actemra doesn't work that well for all my autoimmune conditions.

When I was on Actemra and tapered off Prednisone the first time, I had a massive flare of panuveitis shortly after tapering off prednisone.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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My ophthalmologist was rather adamant that I be on Humira instead of Actemra to prevent recurring flares of uveitis. I went from zero prednisone to 60 mg again in one fell swoop. Humira was started and Actemra was stopped. When I tried to taper off Prednisone again ... I only managed to get back to 15 mg. My flare of uveitis was controlled but PMR wasn't.

My rheumatologist acknowledged that it would be impossible to adequately treat all of my autoimmune conditions with a single biologic. I could only be on one biologic so I needed to choose between Actemra or Humira. My only other option was to stay on prednisone. It was solely my decision to go back on Actemra because I had too much pain on Humira and I couldn't taper off Prednisone again. I only chose Actemra with the understanding that I might need Prednisone again in the future.

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@dadcue I believe what linda7 is trying to tell you is your experience is your experience and does not apply to everyone. None of us are medical professionals, we are the victims of this horrid PMR and everyone's journey is a little different from the next person. Simply explaining what you understand is enough. We need to all respect that we each struggle to decide what is right for us.
I have recently been diagnosed with Giant Cell vasculitis, asymptomatic, all very rare and I suspect that there is not another member of this Group that has walked the road I am on. They are still trying to evaluate where I am on the Giant Cell journey while I live with the threat of a possible aortic aneurism. It is scary, both my short-term future and my long-term future are unknown. I am determined to play the hand I was delt with maturity and optimism. Plus, I have a three-week vacation planned to start the first of Feb. We need to find out if I should cancel. We never know what someone else is dealing with.

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nm11643 | @nm11643 | 3 days ago
In reply to @dadcue "@linda7 "He told me that in my present condition, without any major side effects from prednisone,..." + (show)
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@linda7
"He told me that in my present condition, without any major side effects from prednisone, staying on 5 to 6 mg prednisone indefinitely is what I may need to do. I think you need professional advice tailored to your situation."
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I absolutely agree with needing professional advice when trying to discontinue prednisone after long term use.

However, in my way of thinking, needing to stay on 5 to 6 mg prednisone indefinitely for prednisone induced adrenal indefinitely is a major side effect of Prednisone.

Now it is being learned there is no safe low dose of prednisone. It hasn't been learned for PMR/GCA yet but for other autoimmune disorders like Sjögren’s and rheumatoid arthritis --- there wasn't a completely safe lower dose of Prednisone---maybe just less severe side effects on a low dose.
https://sjogrens.org/blog/2020/what-are-the-side-effects-of-low-dose-prednisone
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I was only able to discontinue Prednisone after 12 years of treating PMR when a biologic was tried. The biologic didn't suppress my adrenal function while it controlled PMR. It still took me nearly a year on low dose Prednisone for my cortisol level to improve. It took another year or two for my symptoms of adrenal insufficiency to improve. The overwhelming fatigue on low doses of Prednisone and after I discontinued prednisone was overwhelming indeed.

There wasn't that much my endocrinologist said she could do if I still needed more than 3 mg of Prednisone to control PMR. There wasn't that much she could do for adrenal insufficiency after I got down to 3 mg.

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@dadcue Thank you for sharing your experience. Everybody is different, for the rate of metabolize the prednisone varies. Mine is slow one. Just 10 mg in the morning could cause me sleepless during night. After initial tree days of dosing at 10 mg/day, I had to drop it to 5mg/day. That was the dose I took for the next three months. Of cause it was not very comfortable, there were some bearable pain and stiffness, especially in the morning. It was still better than sleepless night. After that, it took 15 months to completely off prednisone. Thinking back, I realized my Adrenal system was compromised, but never stop working. That made the journey back to prednisone-free life easier.
PS. I was medicinal chemist before retirement, I have habit of doing literature search before starting any medication. Eg. prescription was 15 mg/day. After search/calculation, I knew the correct dose was 9.8 mg/day for my body weight. Also, I asked to check my cortisone level before I took off prednisone. My PMR was more and less related to the Covid vaccine boost shots. I stopped taking vaccine shots during recovery. That was my personal decision. Everyone should consider their own priority.

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hollycook | @hollycook | 3 days ago
In reply to @bluebird25 "@tweetypie13 That is what I have done this time to get down from 5 to 3…..very..." + (show)
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@tweetypie13

That is what I have done this time to get down from 5 to 3…..very gradual transitions alternating between 5 and 4.5, then hold, 4.5 and 4, then hold, 4 and 3.5, then hold, 3.5 and 3, then hold, and now 3 mg. It has taken time. I am nervous about dropping further but will probably continue these very gradual steps. Others on this site have suggested this kind of a schedule.

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@bluebird25, That’s exactly where I am! For the past 2 weeks I alternated 3.5/3 mg. This is my first week with 3 mg daily. In another 6 weeks or so, I’ll do the 3/2.5 mg alternating dosages. Good luck!!

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