Will try to put my story in a nutshell, since it' been a while since I posted. I had been on remicade for years and had to stop due to really stubborn veins. Went on Humira and was doing relatively ok, till I went on medicare and could no longer afford the cost. For about 6 mos I was doing ok (according to my standards). Then had really bad flare when I was out of town for 3 weeks. Let me backtrack for just a minute - I've been taking entocort along with these for a few years.
Saw my GI when I got back (that was back in Feb.) Since I could no longer afford the humira my dr. suggested going back on remicade, since this is an office procedure and would be covered. First initial infusion went fine. With the next one I had a really bad reaction and it had to be stopped. Was vomiting, dizzy, and broke out in a body-wide rash. I know this is not unusual, since my body had worked up antibodies to the remicade. So that was the end of the remicade. Saw my dr. yesterday and he felt that I should try 6MP again. I had taken only a few pills a few years ago and felt really sick, so I stopped. I was willing to see if I could try again, so I took my first pill last night with food as suggested in other posts I have read. I woke up this am feeling extremely nauseas, no appetite and just an overall sick feeling. Don't want to go through this again. I think my body is telling me that these meds are not welcome.
I have a great GI, who is very respectful of my feelings and needs, and I do trust him. I just don't know where to go from here. I think I will just continue with the 9m of endocort for now.
I've been dealing with this horrible disease almost my entire life and I'm so frustrated right now. I just want something to help, be affordable, and not cause such horrible side effects -- not sure if such a thing exists.
Sorry for the long post. I tried to shorten it as best I could. Just needed to come here and rant to people that really understand. Thanks for reading. ((HUGS)) to all.