hospital and reduction of steroids

[Crwbin1]

Hi all, hope you are enjoying the sun.

This is a bit of a long post, so please bear with me and I hope you could give me some advice.

I’ve been in hospital 5 times over the past 8 months due to , sepsis and severe diverticulitis flare and perforations in the intestines. I have just been discharged from hospital last Monday (3 March 2025) after being admitted in via A&E (again ,after 11days from the previous visit) and had to have an emergency operation as I had sepsis, the sigmoid, large bowel and part of intestines taken out and a stoma put in. Then I got aquired Flu A whilst in hospital. So it’s been a bumpy ride.

Before going into hospital I managed to reduce from 30 mg to 12.5mg. Over the past year. And was going ok. Had PMR diagnosed last year.

Whilst in hospital this time they increased the steroids to, apparently , 200 mg whilst having operation (had operation 16th feb 2025) then reduced to 60mg. They had changed it from prednisone to hydrocortisone as I was on liquid only drips. I made it quite clear that I was worried about reducing too quick as was worried about adrenal issues -amongst all the other stuff I’m trying to cope with at present. So the pharmacist has come up with a reduction plan. Which started from 3/3/25 as 30 mg for two days, 25 for three days, 20 for 3 days -which is where I am now and then from 11th 15 mg for 3 days then go to 12.5 from 14th.

I am really feeling effects of this reduction, I’ve been falling asleep in morning and feeling pretty “woozy” legs are like cement and then feeling wiped out in afternoon.

Suppose the question is, although the pharmacist at hospital has given me this schedule I do wonder if this is too quick and scared I could be going into a flare for PMR , my body is still not right from the operation, and having to heal after such a long time being so ill. what are your thoughts?

[PMRpro Ambassador]

Sorry to hear you have been so ill - and that really was some serious stuff.

After all that I'm really not in the least surprised at how rubbish you feel - being considered well enough to go home is NOT the same as being recovered. In hospital you are waited on and not moving around a house with stairs. I suspect most of the fatigue is the usual "home from hospital" fatigue rather than not enough pred at 20mg - although that is a speedy reduction and your body will notice the changes every 3 days. In terms of adrenal function, you can safely reduce at that rate down to 10mg but after all you have been through, I personally would ask to slow down at 15mg.

All the best for your recovery - but really, just getting over flu would take several weeks. Add in all the rest and I suspect you are looking at a few months before you are up to snuff.

[Crwbin1 in reply to PMRpro]

Thanks for the advice. I think you are right about the 15mg rate.

[Grammy80]

You certainly have a great deal to contend with and I wish you the best. PMRpro has given you some good advice. I'm in the states....but wonder if it would be beneficial to talk to a consultant; though I know I'm not familiar with the English system.

Please be good to yourself and hopefully, you have some help at home. Take care💞

[Crwbin1 in reply to Grammy80]

Many thanks for your kind words x

[Fatsiajaponica]

Just wanted to send you a hug and some flowers!💐 You have been through the mill, coming out the other side, one stoical lady. Wishing you a steady recovery, take care of yourself. PMRpro has nailed it, as always😜

[Crwbin1 in reply to Fatsiajaponica]

Thank you. It’s been bumpy but I’ll get there. x