Hi All . Onging steroid reduction here at very slow pace. Im taking 5mgms 5days a week , 4mgms 2 days . Any extra stress makes things difficult .
My symptoms are fatigue ,low mood, change of appetite , and nausea.
Re appetite and nausea : reminds me of early pregnancy . I cant face my morning coffee and dont want to eat . I resort to bread rolls toasted which I never eat normally . I crave ginger beer and tonic waters , again not things I usully drink .It would be consoling if others had similar experiences. Iv e a vagur feeling I m.going mad !
Written by
Rosekid
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..and you aren’t going mad, just through a very difficult time….and time is really the only way to get through… and yes we all go through it- but for some it’s worse than others.
Those symptoms could be due to low adrenal function and can make one feel vile. I remember it well. At this level I dropped by 0.5mg not 1mg. Do have a read of this from the FAQ’s, essential reading for low Pred takers and then see if this makes it clearer.
Yes…I have all that, & been battling it for over a year. I’ve been put back to 5mg by my doctor twice & now trying my third taper. Rheumy thinks I’m Addisonian. But basal cortisol was just over 500, which I believe is good news…but still getting all those symptoms…& more. Going down even slower now, & was very slow the last two times!! No breakfast, two types of nausea treatment (mine turned into vomiting), wish I didn’t feel so emotional (unlike me), all just vile & depressing! Nearly cancelled our holiday in June! You’re not alone, for sure, hundreds of us like this!
Well that shows your rheumy is out of touch! It isn't Addisons if you are producing that much cortisol and it is secondary adrenal insufficiency we have - NOT Addisons.
This is the rheumy I had the ‘bad’ appointment with! He didn’t say it to me, he wrote it in the follow-up letter, which he sent to my Doctor. And no, he didn’t copy me like my other consultants do! But he hasn’t seen the results of the cortisol test, in fairness. My GP suggested it to me, after he spoke to an endocrinologist on my behalf. The Rheumy said I should have a cortisol test about a month after I completely finished taking the steroids, which, with his taper, would be mid-August. I am down to 2mg now, & holding. We fly to Italy next Thursday & I don’t want another rather ruined holiday (but that wasn’t pred, it was my poor Aunt having a stroke, then surgery, then passing away). Sadly, we aren’t coming to the Dolomites, I’m not well enough for mountain hiking! We fly into Perugia, then I’ve rented a house on the Umbria/Tuscany border. Heat should be better by then, too. Very happy with 80-85, don’t need 102! It’s 38 in shade there today, the owner of the house wrote to me!
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