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Hi all, how long should I be on steroids???? I had a severe flare up and was admitted into hospital for 5 days and was on 400mg hydrocortisone steroid a day, they sent me home with prednisolone starting at 40mg then taper down over an 8 week course. I was doing really well, and actually thought I was in remission but as soon as I was reduced to 25mg (the 4th week), the pain came back, the consultant has told me to go back to 40mg a day for 2 week, then taper down looks like as soon as the dosage is lowered then all hell breaks loose....just wondering if anyone else has had long periods on steroids.xx sorry for long post but wanted to try and fit everything in.

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    Hi Dawn

    Sadly this is a really common problem. Symptoms kick off quickly on reduction and after having a period of feeling well it is so difficult to cope with being ill again. However, steroid dependency occurs very quickly and like any addictive drug, they are notoriously difficult to live without.  Long term use really isn't recommended because they do cause problems both physically and mentally, but they should be respected for their life saving brilliantness!!

    I have found the only other alternative to long term steroid use has been to use a MODULEN IBD liquid diet whenever my symptoms demand steroid use. I have done this over 25 years of disease and although quite tough, it's far better on the body and the mind. I think it isn't really offered as a treatment generally as it is far more expensive than the steroid option and its effects definitely not so fast.  

    However, should you decide to try this option, your Consultant should support you along with a dietician. 

    The liquid diet route is always going to connect you more with how your body is affected by the disease and how your lifestyle and food choices might impact on your body.  It may be worth investigating to see if it can help you get off the steroids with the next round and possibly give you an alternative for any future flares. 

    Really hope you feel well again soon. 


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    Hi Dawn

    just wanted to reassure you a little, I am 6 weeks post op (iliostomy) but prior to this I was on doses of pred ranging from 20-40mg for 20 months, it was a necessary evil for me as I needed surgery right from the starting point but for various reasons I couldn’t undergo the surgery until 6 weeks ago. Sometimes steroids need to be used for longer stretches but as long as you’re being monitored try not to worry - there are plenty of folk that need to take them permanently.

    wishing you a speedy recovery x

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