Pred reduction and side effects of..

[yaf_user681_15459]

Hi,

My 4yr old daughter is on a pred reduction at the moment, having been on the horrid stuff continuously for over 2yrs on maintenance dose.

Today is day 6 of it and she really isn't great to be honest. She has complained of a sore chest for the last few days but isn't having her usual chest symptoms so we are watching and waiting with regards to that. However, she has Adrenal Insufficiency also and this is the bit that's a worry right now. She is exhausted (very unlike her), quiet, she says her 'bones hurt' and her blood sugars are at the upper limit.

I guess I'm worried her adrenal probs are showing signs again with the reduction of the pred.

Anyone??

[Hidden]

Hi Emily, how stressful!

If blood sugar is at the upper limit then she's probably not short on cortisol - a classic sign of low-cortisol is low blood sugar, even more so in children than adults.

However... all the slow and fast acting relievers can increase blood sugar, so if her blood sugar was 'low normal' (e.g. 4) and she'd had a lot of reliever then that might be a sign that cortisol was on the low side.

It's a heck of a bump coming off of steroids, but I'm assuming they're doing a taper? It might be that they are tapering just a little too quickly. Have they suggested supplementing with a more natural steroid like Hydrocortisone, and then weaning that? It can make the process less harsh because your adrenals can be supported through the day but allowed to kick in (if they can) at night/early morning.

What dose is she on now? At anything over a few mg of pred she should be well covered adrenally still, except if she were to get a serious infection or break a bone etc. Have they given you a protocol to follow in case of illness or injury while you're tapering?

I'm afraid exhaustion, aches and pains and feeling like crap would be considered 'normal' for a steroid reduction... I sometimes think it's a shame that medics who want to prescribe steroids don't have to go through a compulsory 4 week course of 40mg of pred followed by a harsh taper

Cx

[yaf_user681_15459]

Thanks alot for your reply.

Yup I agree medics should have to have a go on these meds to realise how we feel when we pitch up at the surgery!!!!

Her sugars go from 4 -10.8!! All over the place!!

She's been on 3mg pred for over 2 yrs. she came down to 2mg last yr and we are now weaning onto 1mg. I feel a 50% reduction is quite harsh but the cons was so flippant and said just do it!!

When we saw the endocrine cons last yr he said she would go onto hydro but the resp cons said she will be ok!!!!

We have a protocol as to what to do and when to give emergency hydro. She's certainly nowhere near that stage right now but I suspect just at the niggling stage.

Fingers crossed she will come through it quickly. I've got an app to chat to gp on phone this pm so we will see what she says..although I've found the GP's are clueless when it comes to Maddie and often end up asking me what I want them to do or otherwise phoning the hospital for advice!!!!

We shall see......

Thanks once again xx