Anyone had prednisone as their first treatment and it didnt work? What next?

[Kerry]

I was diagnosed in August 2011 aged 37 with crohns of the large bowel. I was put straight on a course of prednisone and i just finished tapering off it on Dec 21st. I was so excited to get off it thinking id be ok for a while, and ive had terrible side effects from the taper, but for the last week ive got diarea, i rarely eat and when i do it goes straight through. My bottom feels so uncomfortable I think i have bleeding but that might be the straining not the crohnes. I dont have any stomach pain.

I have been clinging to the hope its just withdrawal and will pass but having not eaten anything much for a week (a soup per day really - how does that even create D - i just dont get it) im so weak i can hardly function. My work is suffering and i need to work. My consultant is away until next week. Im going to see a dietician tomorrrow who im hoping will put me on the elemental cartons - although i hear they are for small bowel treatment rather than large bowel. Im going to my GP this afternoon to see if i can get some drink thats got nutrients in it to tide me over as i feel i want to cry at this moment. All these jobs around me need doing, my gorgeous dogs need a walk and im supposed to start IVF in 3 weeks. No way i can do that. I really thought when i came off prednisone id have a bit of peace and i stupidly trusted my body to be Ok for a while.

Anyway I dont want to go back on pred - the side effects were horrid and it clearly hasnt worked if the crohnes has come back as soon as i stopped it. Has anyon had this experience and if so what were you put on next?

Sorry Im having a rant. im having a down day

thanks

 

[seaofdreams]

A lot of people start getting flare symptoms during a taper, even as early as hitting the 10-15mg mark. Some Crohn's and other auto-immune diseases even maintain a low dose of pred for a long period of time (which isn't really recommended due to the long term health effects) because it's all the can do to prevent flaring. I hope things pick up for you soon [hug]

 

[Grumbletum]

Hi Kerry
Good to meet you, but sorry it's under these circumstances. Many, many people including myself, are put on Pred as a first option and for a lot of us, it doesn't always work first time at a lower dose. Sometimes, it will help with symptoms but not be actually doing very much to deal with the inflammation. If your doc suggests a higher dose, it might be worth asking if it is worth giving Entocort a try. It's another steroid but is supposed to have fewer side effects.
Did your doc mention a maintenance drug at all? Most people are prescribed a med which will 'take over' from the steroid in order to keep you in remission, if you've managed to acheive it. They may start with something mild like Mesalazine/Pentasa to see if that works, and if not may move you on to Imuran/Azathioprine. That might depend if your doctor is going to take a top down or bottom up approach i.e start with the milder meds and work up, or blast it with the big guns and taper down when things have settled.
I so hear you with the Pred. I started on 20mg, but after a CT showed severe inflammation it was bumped up to 40 and I ended up on it for 6 months. I got a new job, in a new field for me, just as I was starting to taper which was a nightmare as I was so tired and spaced out all the time.
Please come on and rant any time you need to - sometimes it just helps!

 

[Artificial]

Hi Kerry,

Like you, pred didn't do anything for me either so I was put on entocort instead as well as Azathioprine. Like Grumbletum said, it might be worth seeing if your doc could try you on entocort as i found the side effects a lot milder x