I've been where you are now and it is scarey, i still get scared 10 years on, it's a very natural reaction. I was on pred for about
3 years, gradually tapering off then flaring again. I eventually got off it completely and haven't been on it since, im now only taking mesalazine. Since having the disease ive done a biology degree, met and married my husband, bought a house, held down a high responsibilty job and am currently 16 weeks pregnant!! So there is definately life after prednisolone!
If i could give any advise for someone at the start of this journey it would be the following:
-look after yourself, nap when you need to, turn down social events if you're ill, don't try to be super woman
-look at your diet, i think this is really difficult to do when on pred as it masks your reactions to food so initially i'd say cut down on processed and fatty foods, limit sugar and consider cutting out alcohol and definately no smoking
-don't be hard on yourself, again the not being super woman part-if there's certain things you miss out on or can't achieve, that's ok, you can only do your best
-always take your medication even if you're feeling great
-get as much support around you as you can, be
open with those closest to you, surround yourself with good, understanding people-you'll realise who your friends are and they'll be worth their weight in gold!
27 years old, diagnosed 1998
mercaptopurine, prednisolone, azathiaprine, actonol
currently on pentasa, calcium and folic acid