I have been sick with my UC for about 2 years now, not truly diagnosed until last march at which point i was put on Prednisone (which cleared up my flare and made me feel 'normal' again with very little side effects). After trying several times to taper off of prednisone i was never able to get below 10mg without my flare starting up again. my doctor has tried several things so far:
Bentyl - Made me feel Loopy and didn't do anything for my UC
Asacol - Can't Tolerate them and made my UC worse
Entocort - Tolerated it fine but didn't do anything for my UC
My doctor has decided i am now 'Steroid Dependant' with my UC and has put me on 6-MP to try and help get me off of it. He started me on 50mg which i did ok with. Some nausea at night but if i ate something with it i was generally ok. First blood work came back normal so he increased it to my regular dose of 75mg. Right away i was nauseous all the time, no matter what i did or try. Went for my blood work two weeks after starting the dose and the nurse called back and said they were a little concerned because my Liver Enzymes were very elevated. I told them about the nausea and overall not feeling well and she told me to try splitting the dose to 25mg at breakfast and 50mg at night. I went a week like that not feeling any different. Called them back and let them know so they had me go for blood work again to check my liver enzymes again, and they told me to drop back down to 50mg until i heard back from them.
Of course, the labs messed up faxing my blood work so they didn't get my results before the weekend, however i am still not feeling great even on the 50mg. I seem to have a lot of nausea, indigestion and abdominal pain. I do have urgency, but no D and my bowel movements have increased again. I am waiting to hear back from them.
She had mentioned that if this didn't work they would try me on Imuran as sometimes you can tolerate one over the other. Has anyone had better luck with Imuran? I am nervous to try it as it seems people seem to complain of more stomach upset with Imuran than 6-MP (I have a very sensitive stomach when it comes to medication).
I guess i just feel at a loss. My mom asked me when i felt my best since being diagnosed and i said when i was on 15mg of Prednisone, i felt human. I know i can't be on prednisone for a long time but i just wish there was something else i could try that would make me feel 'good' again. I am getting so frustrated and annoyed with all the changes in medication and none of them helping me as much as prednisone does. I also feel guilty telling the doctors office that i am not feeling good as i feel like i annoy them.
I am also planning on adding a probiotic to my regimen (just ordered them over the weekend so starting them this week).
Any suggestions would be greatly appreciated, i am so frustrated right now!!!
Diagnosed with UC 3/2008
Calcium + Vit D
Entocort 9mg daily
800mg Asacol 3X daily