Cortisol and adrenals Pro where are you

[Nap1]

My cortisol level was 1. Both my endocrinologist and rheumatologist did not seem concerned. My rheumatologist said my fatigue is mostly my arthritis and was caused by pain. Also said it was useless to take an adrenal test when you Are on 6.5 mg of prednisone. I had decided to stop myActemra and not even try to get below 6.5mg of prednisone. Rheumatologist wants me to continue the Actemra and continue to reduce the prednisone. I no longer know what to do. HELP.

[SheffieldJane]

Hi Nap1, what are your reasons for not wanting to persist with Actemra?

Awful fatigue does go hand in hand with auto-immune diseases. I do not understand what your Cortisol level 1 means. Was this as a result of a Synacthen Test? 6.5 mgs would distort the results I guess.

It would be easier for us to give an opinion if you say how you are and what effect Pred and Actemra are having on you. You seem to have lost faith in your doctors. Personally I am very interested in people’s experience of Actemra. I have heard good things.

[Nap1 in reply to SheffieldJane]

Jane I need to take synachten test. Doctors down here (Florida) are so different. My NJ Rheumatologist wants me to take this test. He does feel that I have adrenal fatigue. But that you can get better. The Actemra did great thing for me. I got down to 6.5. I am agreeing with my NJ doc because of the way I feel. I can’t remain on the couch the rest of my life. NJ doc is calling in the AM to discuss alternatives.

[Hidden in reply to Nap1]

I hope the discussion goes well. I am still at 10/9 taper. The rheumy said they would check my adrenal gland @ 6mg. Fatigue is terrible and I hope you start to feel less so.🌻

[SheffieldJane]

Sorry, I am coming late to everyone’s conversations ( no WiFi for 2 weeks). I hope the solution comes very fast for you!

[Nap1 in reply to SheffieldJane]

Thank you

[PMRpro Ambassador]

I'd dispute it is pointless having an adrenal test while on 6.5mg pred - stimulating the adrenal glands should result in an increase in cortisol, just not the same as if you weren't on pred and it needs an endocrinologist experienced in interpreting such results to do it. It is true that all the test can show at that stage is WHETHER your adrenal glands are CAPABLE of producing cortisol at all. But that alone is a useful piece of information - if they can't then they won't recover however slow you reduce.

[nuigini in reply to PMRpro]

Referring back to our back and forth discussion on my fatigue on a previous thread and the possibility of only a 50% absorption rate of prednisone...where and when would an adrenal test be worth considering?

[PMRpro Ambassador in reply to nuigini]

When you could persuade your doctor to do one probably! Or when you have adrenal insufficiency symptoms. Like increasing fatigue as you reduce - the problem is going to be if that happens above 10mg when I doubt many doctors would be willing.

[nuigini in reply to PMRpro]

Somehow I knew that would be the answer. 😊 Fortunately, I may have found a GP back home prepared to listen and work with me. He's actually signed a three year contract and not the usual fly in fly out locum. We only had one visit together before I headed to Panama, but I shared a number of articles and my history with him and he seemed anxious to work with me on my return in the summer. He said he clearly needed to do some current research on PMR. One can live in hope. My husband had an appointment right after mine and the doctor commented: "Boy, your wife certainly likes to do her research". 🤓

[PMRpro Ambassador in reply to nuigini]

Ooooohhhhh - that sounds very promising!

[nuigini in reply to PMRpro]

Time will tell. I'll let you know.

[Nap1 in reply to nuigini]

Where do you live now that you were able to sign a three-year contract with a physician. I can sign a one year contract with my concierge physician which actually ended up being only six months because I go from Florida to New Jersey.

[nuigini in reply to Nap1]

Sorry, that wasn't the intended meaning. I live in a very small town and our medical clinic usually operates with locum physicians who fly in from many different places for 2 to 4 week stints. Some come on a regular basis, others not. The physician I saw has signed a 3 year contract with the clinic. Patients do not have contracts with doctors in Canada as far as I know.

[Nap1 in reply to nuigini]

Ok so it’s Canada O Canada. Too cold for me in the winter. But a beautiful country

[Nap1 in reply to PMRpro]

So just talked to rheumatologist in New Jersey and we are sticking with the program 6.5 mg of prednisone Actemra every 10 days instead of two weeks if numbers stay good. Just got two shots of Cortizone so we have to wait to do ACTH test. We are going to wait six weeks and perhaps in that time there will be a little life in the adrenals. We could not understand why my endocrinologist and rheumatologist didn’t want to bother doing an ACTH. If there is any life left I would imagine I might know that and it would be nice to know even if they refuse to come alive. So that’s my story for today, similar to last week. I find it amazing that the difference of 1300 miles makes the difference in the care. It’s the same country. But I guess that can be true in the 5 mile radius as well. He told me to get a bracelet sating adrenal insufficiency and prednisone 6.5 just in case.

[30048]

I got the same B.S. from my rheumatologist. Guess a concerted effort to convince us we do not have the disease. After six years and counting. I guess she is as tired of me as I am of her. That said. The endocrinologist has been more helpful . I was on actemra for a bit and keep going back to that juncture when my prednisone stopped working.....there may not be a connection but that is the only thing I can come up with that could have impacted me. My cortisol level has also been ar 1.....decadron , injected, brought it back. Just a thought. Also, it is easyfor them to be unconcerned.....they are not the ones that are risking their sight.

[Nap1 in reply to 30048]

I agree with you it is tough out there and 1on cortisol is very low. I keep in touch with my New Jersey rheumatologist wants me to take a synacthen test as does the pro. If court is all is at one and I am at 6 1/2 mg obviously I am not absorbing the prednisone. My thought is the Actemra has taken over. But that doesn’t help the adrenals. My one shining star is my New Jersey Doctor Who I text almost daily and he responds in kind. Let me know how things go for you and I will do the same.

[30048]

Thanks. Will do.