I am starting my 3rd month of Humira, but I'm not sure if its working.
After my open surgery a year ago, I continued to have D and I developed another fistula, but was not having any pain. My D was constant, averaging between 8-12/day. I was taking up to 3 immodium/day to try and keep it in check and wld still have 5-6 BM's per day, usually of a pudding type consistency. If I didn't take immodium, it was mostly water. I was also gassy, bloated and having the major gurgling going on.
After the first 4 loading doses, I was able to go off the immodium, stools dropped to about 5 per day and other than being tired, I felt good. 2 weeks later I took the additional 2 doses and was fine for the first week, then started having D again on a regular basis. This past month (the 2nd month of being on it) I take 1 dose every other week. I get no relief from the D at all, and have had to go back on the immodium taking it 1-2 times a day again. I am again gassy and bloated, and every time I eat, I can feel the food gurgling through. I am also exhausted, especially the first week after taking the Humira. Not having any pain, I am not losing weight ( in fact, I feel like I'm gaining) and I'm not nauseaus, just will have a general 'not feeling well' feeling a couple times a week.
I know that Humira can take 3 months or more to kick in, but how come I felt good the first month and it has been going downhill since? Do you think it may have stopped working for me? I haven't called the Dr. yet cause I know he will just tell me to give it more time, but I guess I'm questioning if I'm even flaring. My Dr. was at first concerned after my surgery because I was continuing to have D, but when I explained to him that over the past 15 years that I rarely DON'T have D, just not as many episodes, he seemed to relax. I'm getting frustrated and I know I'm one of those people who will just "deal" with it, so I guess I'm just asking if this may be normal, or should I go back and tell him that it's just not working out. Asacol and Apriso both made my D 10x worse, so I don't seem to tolerate the 5-ASA's.
Opinions? Suggestions? Comments?
Dx'd w/ Crohn's in 1979 at age 13. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal.
Humira, probiotic, a multivitamin, calcium, magnesium, zinc, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.
Life may not be the party we hoped for, but while we are here we might as well dance!