Hi, first time on the forum. I've had moderate-severe Crohn's disease for the past 11 years (I'm 21), but I've usually been very fortunate when in comes to symptom relief and remission. I was on Pentasa and mercaptopurine for ten years with great success, though I became quite lax unfortunately with taking my medication when I got to college. In the past years, though, I have had many health issues (severe mono, tonsillitis, etc) likely exacerbated by the immunosuppresive drugs. I have since had my tonsils removed and after the surgery I had some weird/horrible throat pains that stumped my ENT and that my gastroenterologist attributed to the mercaptopurine. The second to last colonoscopy showed increasing inflammation and we decided to switch medications due also to increased lymphoma risk after being on the 6mp for so long. I have now been on Humira for a year with great success - my inflammation went away on the last colonoscopy in March and my blood tests were good. I also have been having way more energy and just generally feel 'normal' again, which has made me unbelievably happy. I also have hidradentitis suppurativa on my inner thighs and the humira has really helped keep that in check as well. I have always had trouble with mouth ulcers and a perianal fistula, unfortunately.
Long story short, however, my doctor decided we should check my humira trough levels and antibody levels and it turns out my antibody levels are off the charts (high is apparently 300 - not sure the unit here - and mine are 650). I haven't talked to my doctor yet because they sent the results online after the office was closed...but on the results sheet he wants me to switch to Remicade and go back on 6mp. I am basically totally against 6mp now based on my previous experience and I am extremely reluctant about
remicade for a couple reasons:
1.) cost/who knows what will happen with my health insurance (I live in the US and am currently on my parents' plan)
2.) My gastro told me originally when we were switching to a biologic that humira has a much lower chance of your body developing antibodies based on the origin of the protein used to make it (Humira - human protein, remicade - mouse protein or something) so we chose that. If I am already developing a high amount of antibodies to humira, why would switching to Remicade be any more effective? Also, apparently once you develop antibodies to one biologic, aren't they all less effective??
3.) if high antibody levels make humira less effective, then why have I not had any symptoms and why has the HS on my legs gotten so much better? I really don't want to switch medications because Humira is the last resort for HS and it really impacts my self esteem and is quite painful.
Basically, has this happened to anyone else (developing Humira antibodies) and what medication worked for you afterwards? My Crohn's itself has been manageable in the past and I have not needed surgery so remicade seems like a heavy next step to take. I am mostly just depressed since I thought I could be over my medical problems for a little bit - it has been a struggle for a majority of my life.
Thanks for any advice!
Post Edited (bterrier1995) : 6/28/2017 10:16:34 PM (GMT-6)