I've been on REmi since May 07. It seemed to be working very well. I had my life back and felt like I dindn't have the disease. It was Great!! Right before my last infusion (Jan 10). I flared up 9 days before --nothing real bad, d and urgency in the rectum area. So I used the suppositories--which helped awhile. Thinking the Remi would step in and take over....it never did. I then started feeling a little worse and went with the hydrocortisone enemas. That didn't seem to work. At this time, I started getting cramps and going 10- 15x's a day and bleeding. So here we go again, saw the dr, I'm back on predinsone and he is keeping my Remi appt For Mar6 as planned. I haven't felt this bad since last year before I started Remi.
I wonder, did the Remi stop working? The only changes with the medicine was that I lost weight so my dosage was adjusted accordingly. Altough it's not a lower dosage, but maybe my body was so used to the other dosage, it needed more of it. I am very rare with taking meds. IE: when tapering off pred to the lower doses, I actually get worse and go through severe withdrawal. I'm afraid of taking it, but it's my only choice at this point. Maybe my body is craving more of the Remi??
The other thing the dr adjusted was my imuran form 100 to 50 mgs. So, for a month I was on 50 mgs. He upped it here during this flare to 100 mgs.
Aside from that, I had been going through some stress. My daughter has mono---Our fine Emerg Room people never tested her for mono and said she had hepititis!! FREAk Out is right!! Wasn't until I saw my family dr That he ran the mono test and that's what it was. Thank God!! In fact that is the week my symptoms got at the worst.
So, with everything else going on and missing work because of this disease....yep I'm a little stressed!
Whether or not you may have any answers, I sure appreciate any input. Just needed to vent!! I know that's what we are here for!!
Remicade- 7th infusion Jan 10,2008
Dx with UC In Mar 2004. Mainly Left sided, at times has skipped through the whole colon. Also have IBS.
50mgs of Imuran, Asacol 3/3x's day, Bentyl as needed
Holistic approach- supplements- fish oil, probotics, gut repair, allergy enzyme, paleofiber