Steroid withdrawal

[Headoverheels]

As I mentioned previously I have recently been hospitalised for 7 days. I was on Prednisolone when admitted ...they never touched me so I continued on them..and then the strength was increased to me feeling 'doolally '! So all in all I have been taking Steroids for some time and after my discharge from hospital I have slowly weaned off them but I am feeling so poorly...light headed and body aches. Is this to be expected?

[JAmanda]

I’m afraid I don’t know about how you’re feeling now as I weaned myself off in triple time (going down 5 a day instead of every three days) when I was feeling doolally! Just wanted to say that’s the only word to describe it!

[Lysistrata Administrator Community Ambassador in reply to JAmanda]

Ah - be careful with that, see my reply to Headoverheels! Steroids are rubbish but it's best not to reduce too fast as your asthma can get unhappy, plus your body needs to adjust to making its own cortisol again.

[JAmanda in reply to Lysistrata]

yes I know but I found a good scientific paper that said if the patient is psychotic get them off the meds immediately - so I took a midway path. It’s so hard but I just had to work on how I felt. I was doolally and ranting! This time round the consultant has not given me the usual 5 days x 40 course but has said taper from day two ie 40,35,30,25 etc I know I’m a terrible one for making unilateral decisions but often I couldn’t get to a medic so had to decide for myself !

I am listening though, I promise. And having a thyroid condition am terrified ever to get adrenal insufficiency.

[Lysistrata Administrator Community Ambassador in reply to JAmanda]

Ah, I hadn't realised it was having more than the usual effect mentally, sorry! It's a delicate balance though - worth mentioning to your private consultant as an FYI?

If it helps, I had adrenal insufficiency and I have no thyroid, never had! And it was ok, now recovered from the AI. I appreciate it may be different if you have something like an autoimmune condition though. No thyroid is actually fairly straightforward, I just take levothyroxine.

[Headoverheels in reply to JAmanda]

Thank you JAmanda. I had mega strength in the hospital. The next morning, after no sleep, I was hyper..and then after lunch I sobbed and sobbed and sobbed...I just couldn't stop..I was a wreck .

[Lysistrata Administrator Community Ambassador]

Yes - that can happen and it's something to be careful with. Your body got used to them giving you cortisol and didn't produce its own, and it can take some time for that to wake up.

How long were you on them and where have you got to now? May be an idea to stop weaning for now and let your Dr/asthma team know how you're feeling. It's not safe to leave yourself without any cortisol if you're having problems making your own.

[Headoverheels in reply to Lysistrata]

Thank you Lysistrata. I must have been on them continously for 15 days. In hospital they increased dosage...the Consultant said mega! I have followed the calendar that the hospital supplied and slowly weaned off them and on Saturday I stopped. Hopefully these symptoms are temporary...I think I am guilty of rushing things so I must rest.

[Lisamcharman]

I would urgently ask to have your cortisol levels checked as I am Adrenal deficient due to steroids and now can not ever come off them and it makes you feel dreadful coming off them if the Adrenal gland doesn't wake up and can be dangerous so I would not delay speak to someone urgently I hope it goes OK

[Headoverheels]

Thanks Lisamcharman. I think perhaps I am not taking this seriously. I did follow the hospitals instructions of weaning down gradually as I know it's unsafe to suddenly stop the steroids.