Tapering off steroids. Treatment returning...

Sorry meant to say symptoms returning!!

They probably will not give you steroids again. These days they are trying to avoid repeats due to immune system issues caused by too many steroids.

They could take you to a higher level of treatment like azathiaprine.

What are your symptoms?

Did you taper in 5mg reductions? If so, I think that's too fast. When I was learning to manage UC I had two consecutive relapses each time I got down to the lower numbers andhad to go back on 40mg per day.

A fellow sufferer advised me never to reduce by more than 10% of what I had been taking the week before. That means once you get down to 20mg you are reducing by 2mg and then 1mg per week. It takes many more weeks to get off the steroids altogether but it worked for me.

I don't know about other people but my flares always start in the rectum and progress up the colon. if you are the same, it's worth talking to the IBD nurse to see if a short course of steroid foam will nip the flare into the bud.

Otherwise, I agree with sbgoodguy. It may be time for a change of treatment and azathioprine is often the one doctors try next,

Hi Carrie,

I suffered constant ulcerated aggravated colitis for about 5 years and was under two consultants that tried me on every possible med over the time and when it became quite intolerable and affected my life to the point where i took earlier retirement as i couldnt go out because of the constant mishaps and like you i was put on courses of steroids each time as nothing else worked then i saw different lady consultant at another hospital who explained about azathioprine and after taking them for 6years i can honestly say i've been free of those unrelenting symptons and also now meds free for the past 18months,my gastro nurses were always on hand and would send steroid scripts over to my gp surgery if i was desperate to go on hols or special outings but now those days seem a distance away so never give up trying to get a treatment that will help you,i do hope you enjoy your birthday,cheers Maggy.

Hi,

Blood in my stools have returned. I'm so disappointed.

I've been tapering down from 30mg to 5mg for 6 weeks. I've never heard of tapering less than 5mg.

I really don't want to go on Azapraphiine. I don't like the side effects.

So do you suggest i tell the nurses and this isn't a blip?

Thanks

Carrie

Hi Carrie...sorry to hear that .. the exact same thing happened to me in May I had a flare which started in January and normally steroids work for me but this time they didn't my symptoms came back also and I contacted IBD straight away ..put back on steroids and got an urgent app for a colonoscopy as it had been 5years since my last one..anyway after another couple of months I have now just started anti TNF injections ( alumimnab) were I inject at home fortnightly..I need to take a loading dose to begin with and have bloods done for the first 3 months to see that my body is taking to it and I have now just finished another course of the dreaded steroids 😓.. had a couple of niggles but so far not came to anything...so praying these injections work!! May be worth speaking to IBD and asking advice for you about this treatment.. I have had UC for 14yrs and steroids have been my treatment the whole time so hoping now I don't need to take them anymore if this works 👌.. worth asking anyway and hope it settles for your bday 😊