Off Pred - cortisol level high - feeling awful

[Ballywilliam]

Hi All . I’m back looking for your wisdom ! 😍 I was weaned off steroids for PET scan which showed minimal inflamm in aorta so my rheumy wants to keep me off everything for next weeks months to see how I go as he doesn’t want to put me on long term meds until sure of diagnosis . I’m ok with that as I really want to be sure - as Takaysus is such a rare one . I’m Off pred 3 weeks my cortisol level bounced back very quickly and is now going the other direction - checked last week it’s now 640 . I’m really struggling with nausea / exhaustion / wake ar 230 each morn abd can’t get back to sleep / bone pain / muscle pain and hair falling out . ( years ago I had a morning cortisol of 900 but when checked by endocrinologist - urinary output of cortisol it was ok ) Is it normal to feel soo awful when cortisol level is above normal - is this just my adrenals trying to right themselves / am I asking impossible questions ! 😅 ( I also have the complication of post vaccine myocarditis / pericarditis / which is improved thankfully )

Thanks in advance

[Ballywilliam]

Also to add - I’m so emotional - labile - so sad and can cry at random times - and other times of day feel good .

[123-go]

I do feel that you shouldn't be suffering in this way without any medication. If I were you I would ring the rheumy secretary and (most probably) leave a message asking for a call back and stressing that it's urgent as your symptoms are out of control. The secretary may pick up if you're lucky but if your clinic's system is the same as mine, after you've left the message hold on for several seconds when you will be asked to press hash to confirm that you want your message to be passed on.I hope you get this sorted out soon. Keep us informed.

[SheffieldJane]

If it were me I would be worrying about this excess of cortisol and would want the input of an Endocrinologist. I found the one I saw had quite a different take on everything in spite of the fact that my Rheumatologist is very good with PMR/ GCA and other forms of Vasculitis. The Endocrinology world has a different set of priorities and insights. On the Rheumatology side - they cannot leave you to suffer like this. Make a fuss. Sending a hug to you, you clearly feel like a walking open wound. X

[SnazzyD]

I think the bottom line is that you are quite poorly for whatever reason and suffering badly so someone needs to take responsibility for monitoring you and addressing this given that the current situation has been partly induced by the medics. “Minimal inflammation” in the aorta still says some and Myo/pericarditis is significant too. At the very least they need to know how you’re feeling and not be content that you be left like this for weeks. At the least you need to know why you’re feeling like this.

[Ballywilliam]

Thank you all so much . As I was beginning to feel like I was going mad and that I just need to ride the storm and “get on with it . “ 🙄 also was feeling that family getting tired of me being this way ! The secretary just got back and and said she would let him know . I’ll keep you posted . Thank you . 😍

[cycli in reply to Ballywilliam]

it all depends what storm you are riding and If you don't know you need to find out. Sounds like you need to do more than nudging them Ballywilliam

[Ballywilliam]

Thank you all so much for nudging me . Got to see my Rheumy yesterday and he has recommenced pred 5 mg as feels maybe weaned too fast and that’s why I’m feeling so bad , He said unsure why cortisol high and need endocrinology input So on right track I think . He still not 100 pc happy to give me Takaysus diagnosis until

Gets another PET after slow wean from the 5 mg.

But is “def leaning towards this “