Post steroid wean

[Ghoulette]

Hi everyone, me again ☺

So I'm back home after 2 weeks in hospital for steroid wean. I'm now off the preds.

All went relatively OK. I only had 1 full on attack, after which they added in Ipratropium nebs along with my salbutamol nebs four times a day, which seemed to help (I'm already on fostair 200/6 and spiriva respimat). They have discharged me on these too. I know that Ipratropium is a similar drug to my spiriva, and the asthma nurse said I shouldn't need both but it's not impossible to be on both. But, I tried not taking my spiriva for 2 mornings, but by the third morning, I felt really rough and my chest felt really heavy. Hubby said my breathing was a bit noisy and I was really pale. So I have gone back to having my spiriva in a morning too.

They have switched me onto hydrocortisone tablets at the physiological dose (10mg am, 5mg midday then 5mg evening all with meals). I am on this for 3-4 weeks then will have synacthen test to check if adrenals have shut down.

I just feel generally a bit crappy. I'm shattered and find I have to sleep in the day (I was doing this whilst in hospital for the last few days as well). My chest is sore and am taking paracetamol four times a day to keep on top of that. I still get sob on exertion and still have dizzy spells (I have 24hr heart monitor booked for this month).

I'm just wondering, is this normal after weaning off preds and switching to hydrocortisone? I'm aware of the risk of AI and the signs of adrenal crisis, but I just want to make sure that what I'm experiencing is just normal post wean, post hospital fatigue and to be expected.

Any advice gratefully received.

Michelle x

[ccccc]

Hi Michelle

Sorry to hear you're feeling so poorly - I have low cortisol due to Prednisolone and currently waiting to be weaned off 5mg a day - I take it they have checked your cortisol levels through a blood test? Even on 5mg which is meant to replace the cortisol I still feel tired especially in the morning. Probably the stress of being ill and in hospital won't have helped either.

[Ghoulette in reply to ccccc]

Hi

Yes, they checked my cortisol levels whilst in hospital. They are working with Birmingham Heartlands hospital as we are also checking my suitability for biologic therapy (my eosinophils started to rise but not sure if they are high enough yet).

I hope they manage to wean you off completely. I know they said that 5mg pred is the physiological dose. I think you're probably right and it's just the combination if everything.

Thank you x

[ccccc in reply to Ghoulette]

Well I hope you get the biologic therapy - I've just started Xolair after years of trying - here's hoping! But like you I had to go through a lot of steroid-related health problems while getting there (been diagnosed with osteopenia due to steroid use so have to take alendronic acid), so I really do sympathise with how you're feeling. I switched to a new hospital and they really emphasised the effects of the steroids on my body so hopefully your team are doing the same to push for it.

[Ghoulette in reply to ccccc]

I'm so pleased for you that you finally got the biologic. I hope it improves things for you 🥰

I'm with you on the pred side effects. I have a few issues thanks to the pred 🙄. I'm glad I'm off them xx