Stuck on Prednisone

[Cozmo]

I'm stuck on Pred at the moment. If I try to come off it I'm straight in to intense flaring. I've got a duct that is blocked(semen), and I get pain in my lower left abdomen. The Pentasa on it's own does nothing for me.

I've got my first appointment with the specialist gastro I've been referred to on the 25th Feb. The Doctors seem to have done all they can by giving me meds and referring for colonoscopy and MRI(both completed now).

What kind of things do I need to be asking the gastro? What do you think needs doing for me to be able to get into remission? Any advice or suggestions would be greatly appreciated. :hug:

 

[hainman]

hi cozmo.have they not mentioned any specific treatment...ie humira,azathioprine,Methotrexate???these are all drugs that they give to help get you into remision.unless like me you dont get the luck,ive been on all of them and none have got me into remission so its surgery time.You may find they resort to surgery to though,i was dx 5 years ago and was put on asacol and pred,lasted 6 months then came of pred and my symptoms came back with avengance...so got surgery which was good for a while then wham...symptoms back and trial on most of the immune suppresants,
This may be one of the ways the specialist goes,if treatment doesnt work then they will suggest surgery...

hope all goes well at your meeting

H

 

[Cozmo]

hi cozmo.have they not mentioned any specific treatment...ie humira,azathioprine,Methotrexate???these are all drugs that they give to help get you into remision.unless like me you dont get the luck,ive been on all of them and none have got me into remission so its surgery time.You may find they resort to surgery to though,i was dx 5 years ago and was put on asacol and pred,lasted 6 months then came of pred and my symptoms came back with avengance...so got surgery which was good for a while then wham...symptoms back and trial on most of the immune suppresants,
This may be one of the ways the specialist goes,if treatment doesnt work then they will suggest surgery...

hope all goes well at your meeting

H

Hi Hainman,
I really appreciate you replying. When you talk about 'surgery', what has that entailed? I guess they'd make me try the alternative treatments available before going for any surgery. One things for sure, I don't want to stay on predisolone indefinitely, but at the moment I don't feel I have any choice in the matter. Thanks again :hug:

 

[heisenberg]

Azathioprine → adalimumab → infliximab is the usual treatment plan. If one fails then the next hone is tried. If they all fail then surgery is the final option. That coukd entail anything depending on how bad your crohns is. They may choose to rest the bowel for a while or they may remove the affected areas completely.

 

[hainman]

hey cozmo.
my surgery entailed me have a total of 50cm of my small intestine,bowel removed as it was dead,plus i had a fistula joining my bowel to my bladder.....
its last resort depending on how severve the disease is...mine was really bad so it was a must....if the bowel is to far gone,all the meds in the world wont fix it,
on the pred note,i ended up with osteopenia through the steriods,so the less time you spend on these the better....

all the best

Craig

 

[Cozmo]

hey cozmo.
my surgery entailed me have a total of 50cm of my small intestine,bowel removed as it was dead,plus i had a fistula joining my bowel to my bladder.....
its last resort depending on how severve the disease is...mine was really bad so it was a must....if the bowel is to far gone,all the meds in the world wont fix it,
on the pred note,i ended up with osteopenia through the steriods,so the less time you spend on these the better....

all the best

Craig

Blimey... that's some serious surgery. How is it now after having had it all?

 

[Laura Dawn]

I'd see about trying one of the meds that's been suggested. If prednisone puts you into remission, maybe one of the meds will help too.