I'm new to this forum and I am just reaching out for a little support and advice. I have a very courageous 16 year old daughter who has lived with Asthma since she was a toddler. We've had good times and bad. Just now she's in a particularly difficult phase and has had several hospital admissions and has had 6 short courses of Pred in as many months.
The last few times she has only managed getting two weeks between doses. I know every time she has taken them she has needed them, she would not still be still without them but we are now noticing the nasty negatives. I read some where about the Adrenal function being impaired. Could this be possible on this frequency? The Dr did mention the chance of this and is referring her to the consultant but I am told this could take months. Between doses she get severe tiredness, memory fog/poor concentration, loss of appetite and sickness and awful black moods.
It's heartbreaking seeing her like this and feel absolutely at a loss to as help her.
Hey Loulou, unfortunately I have no advice for you and the forums seem very very empty these days. However, what I would suggest is dialling the helpline number at the top of the page. The nurses who run it are absolutely amazing. You would get a lot of support and info from them.
Hi i am new to this site i was on steroids for three months in January the effects were not nice i was tired but i could not sleep for more then 4 hours a day , i could not watch a movie on tv as i could not concentrate on anything for to long i was feeling very low , i have just had another weeks course of steroids again as i have had a chest infection and asthma bad , i changed my diet i eat more fruit and veg now as taking the meds makes me feel bloated and sick and it helped .
My daughter has adrenal suppression. She was diagnosed at 2.5years old so is tricky to say how she felt then. As far as signs go though, before diagnosis she lost LOADS of weight. This was the main reason she ended up having bloods done. They didn't even randomly test for cortisol deficiency until I asked them to. They were thinking diabetes. Her weight lost was profound and she looked literally skin and bone. She would drop off to sleep randomly too and was also drinking lots. I think the one symptom she would complain of constantly was being cold. It was a lovely summer yet she was shivering with cold and would be wrapped up like winter!! She was then diagnosed.
As far as the amount of Presnisalone she had been taking..she had been prescribed it approx every 6weeks the whole of her life by then and had switched to maintenance pred about a month before the test.
I would definately be inclined to go back to the consultant/gp etc and say your concerns and ask for a simple morning cortisol test. This would at least give an indication and really isn't difficult to get done. I think even the gp/practice nurse can do this for you. I presume the test they are thinking of doing is the Synachen test which does seem to take longer and need specialist support while doing.
I hope things improve soon for you both. I know only to well how hideous this condition is and how out of control you can feel as a mum.
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