High Steroid Dose

[WendyWoo50]

My maintenance dose of Prednisone EC is 10mg. I know they like you at a maximum of 7.5mg but whenever I have tried to reduce below 10mg I struggle to get out of bed.

I also take (amongst other things) an immunosuppressant drug daily - 150mg of Azathioprine

My rheumatologist has given me ‘sick day rules’ this means I stop Azathioprine and double the dose of steroids in order to be able to fight the illness then when recovered restart the Azathioprine and start to slowly ‘step down’ on the steroids until I am back on my maintenance dose of 10mg

So… before Christmas I had a chest infection and was given antibiotics I followed the sick day rules although my chest wasn’t good I had so much energy, my limbs ached less and I was more mobile

I decided to sort Christmas while I had the chance I was running about like a ‘normal’ person mum said “I was like a wasp on speed!” Because I just has so much energy

2 weeks later I had recovered from the chest infection so restarted Azathioprine and began stepping down on the steroids from 20mg to 17.5 a week later 15, 2 weeks later 12.5 for 2 weeks then 12.5 / 10 alternate days then for 2 weeks then back to my maintenance dose of 10mg

About a week after I dropped the steroids I started to experience a return of symptoms fatigue, aches and pains, lack of mobility. I thought maybe I’d stepped down too quickly and so instead of reducing the dose weekly, I decided to extend it to every 2 weeks

I always assumed that the return of symptoms was due to the reduction of steroid dose but… the other day I clicked - the same time I reduced the steroids, I restarted the Azathioprine so… that has led me to wondering if instead of being related to the steroids - could it be related to the Azathioprine?

I know we are not doctors on here and appreciate anything said is not actual medical advice but wondered if anyone has any thoughts on this?

Has anyone experienced this themselves?

thanks for your time - again! 💋 x

[lupus-support1 Administrator]

This sounds like classic steroid reduction. 2024 was my Annus Horribilis. It started on 31 December 2023 until around October. My rheumatologist upped my steroids to 30 mgs daily. Reduction led to pain & the usual.

Az belongs to a class of drugs called immunomodulators. It also decreases the long-term need for steroids. For that reason, it is sometimes referred to as a "steroid-sparing" drug.

Our bodies are highly sensitive to steroids, unfortunately. Our bodies are lazy & why make steroids when we are given them via medication. While our bodies are supposed to make 7.5mgs daily, it becomes lazy!

If you are concerned, speak to your doctor.

Hope your body calms down and pain free!

Be well!

Ros

[WendyWoo50 in reply to lupus-support1]

Thank you xxx