Testing for Cortisol levels during taper of prednisone

@dadcue That is very helpful. I am just hoping for any of cortisol activity in the future. Right now it is dangerously low. If it gets to the adequate point I will take the leap and go to zero prednisone. Did you do that and if so how did it go?

Yes. Labcorp and Quest both do the tests. I’m not certain if I am allowed to say the website but Google Health Labs. It’s very easy to do! They have tons of tests available. For my location it was around $100 and well worth it. Just remember to not take your prednisone for 24 hours and test should be done around 8am. I did it faster but that’s not necessary.

That was supposed to say “fasted”. For some reason I can’t edit a reply.

That is another story. I took the plunge. I stopped Prednisone but did a "countdown taper." --- 3 mg - 2mg - 1mg --zero over a week.

I didn't feel bad. PMR wasn't a problem. I didn't have an adrenal crisis. I was okay for about two weeks when I had a flare of uveitis. My ophthalmologist restarted 60 mg of Prednisone.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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Actemra controlled PMR and allowed me to get off Prednisone. Unfortunately, my opthalmologist said Actemra wouldn't work for uveitis and switched me to Humira. Uveitis went into remission quickly but when I got down to 15 mg of Prednisone again I started feeling pain. My rheumatologist was sure it was PMR pain but wanted me to stay on Humira to give it a chance to work. He said I should stay on Humira for 3 months to see if Humira would work.

After 3 months I still needed 15 mg of Prednisone for the pain. There was some behind the scenes discussions between my rheumatologist, ophthalmologist and endocrinologist but no consensus about what to do. Eventually my rheumatolgist said it was impossible to optimally treat everything and I was given some options.

1) I could stay on Humira to prevent flares of uveitis but I probably would need Prednisone for PMR. --- I wanted to be off prednisone

2) I could stop Humira and stay on Prednisone for PMR and prevent uveitis flares. ---- My endocrinologist didn't like that option because of adrenal suppression.

3) I could restart Actemra with the chance of getting off prednisone again because it was working for PMR. --- My ophthalmologist didn't like this option. My opthalmologist said it would be just a matter of time before I had another flare of uveitis. -
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I chose option 3 and tapered off Prednisone again.

After Actemra was restarted with more frequent injections, I tapered off Prednisone a second time. I went from 15 mg to zero in about a month after Actemra was restated ---so much for slow tapers.

My endocrinologist retested my a.'m. cortisol and said it was still adequate when I reached 3 mg. Although I was on 60 mg for a few days and got stuck on 15 mg again -- overall I wasn't on Prednisone very long. I successfully tapered off Prednisone again.

Now I do an Actemra infusion every month. I haven't had any problems doing Actemra infusions every month. I haven't needed Prednisone for more than 4 years.

All my doctors are happy that I don't need prednisone anymore. Actemra doesn't suppress my adrenal function. Actema can come with side effects too but my side effects on Actemra are mild compared to Prednisone side effects.

That is quite a long journey but thankfully something is working for you. I did realize two weeks ago when this back and forth started between my PCP, Rheumatologist and endo that no one knows how to safely treat PMR with adrenal function. There are all different factions involved. At least your rheumatologist gave you the options. I do like the idea of staying on 3mg for 6 months and testing cortisol again then. Thank you for all of your input.

Don't get too discouraged. I was on Prednisone for 12 years before learning about Prednisone induced adrenal insufficiency. There isn't much that can be done if you still need Prednisone to treat PMR. However, 12 years of Prednisone didn't cause my adrenals to permanently shut down. My endocrinologist wasn't too optimistic that I would ever get off Prednisone but I did. It just took me a long time.

I was lucky the doctors I saw always encouraged me to keep trying to taper off Prednisone. I didn't need any encouragement to take more Prednisone because I was a master at doing that.

I think I know what triggered the uveitis flare. I felt so giddy about being off Prednisone that I wanted to try swimming again. I did a few laps in the swimming pool and it felt great. I was thinking I would drown so the swim was spontaneous just to see if I could still swim. I didn't wear goggles and I think the chlorine triggered the flare of uveitis.

My energy improved the longer I stayed off Prednisone. It has been 18 years since I was first diagnosed with PMR. I still have age related aches and pains because I didn't get any younger. I was 52 when I was diagnosed with PMR and I'm now 70. It was a long journey for sure.

I very much look forward to more energy. I was so disappointed when my adrenal glands showed nothing happening because I knew I couldn’t taper further at least for now. Thank you for giving me hope!

This is one of the best threads I’ve read on this site. Thank you all for the scientific notes as well as your experiences. So helpful. I’ve been on prednisone for two years for a lung disease (CEP) and having lots of hormonal and likely cortisol issues. I had a functional medicine person test cortisol this month - very high in the AM near non existent in the late afternoon. She said I’m fine for now which was confusing. I am currently on 3 mg, tapering by .5 each month to try to get to zero (my 8th taper bc I relapse every time and have to go back to 10 mg). Now I understand why I just need to slowly taper still and watch my symptoms. Such a relief to understand why now. Thank you all again!!

@lluth412
"I had a functional medicine person test cortisol this month - very high in the AM near non existent in the late afternoon."
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That is "somewhat normal" for a cortisol level in the morning ---not completely normal in the afternoon.

When did you take your Prednisone dose? For a valid a.m. cortisol level test you can't take any Prednisone for at least 24 hours. Ideally, for a more accurate a.m. cortisol level when on a low dose of Prednisone --- you would need to hold your Prednisone dose for 48 hours.

It is debatable what the low dose of prednisone is. My endocrinologist said I needed to be able to maintain a 3 mg dose for an extended period of time before a morning cortisol level was warranted. I also needed to be "symptomatic" of adrenal insufficiency to warrant a cortisol level to be checked.

I must have been symptomatic enough to get my cortisol level checked and it was "quite low." However, my endocrinologist was somewhat surprised that I had a cortisol level so soon after being on moderately high doses of prednisone for 12 years. Since I had a cortisol level even though it was low ... my endocrinologist was "optimistic" that my adrenal function would continue to improve if I could stay on a lower dose of prednisone. She didn't want me to increase my dose any higher than 3 mg unless it was absolutely necessary.

The main point my endocrinologist was making was that my cortisol level wasn't ever going to improve unless I could stay on a very low dose of prednisone. I was reading that I shouldn't have any pain when treating PMR. My endocrinologist said I needed to expect "some pain" when trying to taper off prednisone. She said I shouldn't automatically increase my prednisone dose for "prednisone withdrawal pain" unless it was absolutely necessary. All the while, I needed to avoid things that could cause an adrenal crisis.

All of this is easier said than done!

I asked this question at my last appointment. Rheumatologist said he wouldn’t order the test until I was off prednisone.