Connect
← Return to symptoms present but lab markers aren't high
Discussion
symptoms present but lab markers aren't high
Polymyalgia Rheumatica (PMR) | Last Active: Sep 15 7:08pm | Replies (23)Comment receiving replies
It’s my understanding this is pretty common. I’ve heard of others mentioning it but the same thing happened to my dad and he received a referral to an endocrinologist because long-term use of prednisone can cause adrenal insufficiency (your body gets used to the prednisone managing your stress hormones, and when you taper off, your body can have a harder time turning that function back on again).
Or in the words of my dad’s endocrinologist, “Long-term prednisone causes adrenal insufficiency.” She said it tends to happen around 6.5-8 mg because that’s around what your body needs to function. (Please keep in mind I haven’t independently verified this, but this is what she said to us.)
The conundrum is the symptoms of adrenal insufficiency are very similar to symptoms of a PMR flare. So she told us it may be the PMR has fizzled out, but now he has adrenal insufficiency.
The only way to properly test for it is to wean all the way off of prednisone and then test (usually not possible if in this situation). Or change over to the other steroid medication (I’m spacing on the name of it right now) until the dose is low enough not to interfere with the lab testing for adrenal insufficiency.
But…the treatment for it is long-term use of a low dose of steroid if your body doesn’t go back to making the hormones needed. That’s where we are now. With my dad’s severe disability from a stroke =/. We don’t know if it’s worth the stress and impact on his quality of life to switch medications to taper, to do a fasting test, that may very well end up simply confirming he needs long-term low-dose steroids.
It could be something else, so of course check with your doctor. But it may be worth asking if your rheumatologist thinks it could be time for a consult with an endocrinologist just to get their take.
Replies to "It’s my understanding this is pretty common. I’ve heard of others mentioning it but the same..."
I'm not your Dad but the same thing happened to me. I needed an endocrinologist to help me taper off Prednisone. Adrenal insufficiency is a well known side effect from long term Prednisone use. I took prednisone for 12 years to treat PMR.
I would like to add that you can have adrenal insufficiency and still have PMR. I was ultimately treated with a biologic that controlled my PMR symptoms while I tapered my Prednisone dose lower. The biologic prevented a PMR flare without suppressing my adrenal function. My endocrinologist said I needed to stay on 3 mg or less of prednisone for an "extended period of time" to allow my adrenals to recover.
I was only able to be on 3 mg or less of prednisone because of the biologic. It took 6 months for my cortisol level to improve. My endocrinologist said I was fortunate because she wasn't optimistic that my cortisol level would ever improve.
The kicker was my endocrinologist said it was okay to go from 3 mg to zero without tapering as long as my cortisol was adequate. I think people forget the reason for tapering Prednisone slowly in the first place is because of withdrawal symptoms and adrenal insufficiency.
It is true that there is a risk of a PMR flare if we taper too quickly. Cortisol is what regulates inflammation. In the setting of adrenal insufficiency, as we lower our Prednisone dose, our bodies lose the ability to regulate inflammation which results in a flare of PMR.
In my case, my cortisol level improved while the biologic controlled PMR instead of Prednisone. Having both PMR and adrenal insufficiency makes it impossible to get off Prednisone in my opinion. I was all set to take Prednisone for the rest of my life except my rheumatolgist said that wasn't a good outcome.
I think endocrinologists understand the adrenal insufficiency problem better than rheumatologists.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
Connect
Thank you! That is very helpful!! I hope things with your dad go well. Post stroke is very challenging. Sending prayers and good wishes!