GI and I have agreed to go drug free for a while...

  I had posted here a few weeks ago that I am feeling the best I have felt in years and have not had any crohn's meds since the end of Nov (about 90 days ago).  I was on remicade max dosage every 6 weeks and was doing metho injections.  Long story short, I was still loosing weight and feeling just plain bad all last year. I have been having heart issues as well and so just did not feel good.  Then, i got pnuemonia back in jan and had a nice 4 day stay in the hospital.  at that time we were getting ready to switch to Humira.  fast forward to today as I have not been cleared form the pnuemonia to take a biologic yet .  I visit my GI.  He tells me that in his opinion that while I am not technically in remission (colonoscopy last Dec with biopsy confirmation) that he really thinks that we should try no meds for a while.  He really thinks that the combination of meds that I take along with the remicade has been making my life misserable.  Yes, It is risky, but I have not had any symptoms in over 90 days.  I agree with him.  So our plan is to visit monthly unless I sense symptoms coming on.  We will do blood work and review my prior month.  We will do a follow up colonoscopy in Dec to compare what has occured.

I know this sounds pretty strange to do this especially since I had surgery a little over 2 years ago and the crohns was back in 6 weeks.  But the dr said that we should worry about symptoms and quality of life more than clinical findings.  ANd if I am feeling and looking this good right now, why change????  He can always start me on biologics again (Humira since I have always been on/off remicade and cimzia).  I just need to pay close attention to my body and follow up with him quickly if things change.

I feel so free right now.....it is a great feeling.  Mind you, I still take 6 different blood preasure medications and blood thinners for afib and meds for gout and for lipids.  But,  I never felt as bad taking all of these as I did when they added the biologics.  He clearly stated that these can cause fatigue, weight loss, anemia.  I had all three!!!!

I feel so blessed to have a GI who is really looking at me and what is best for ME and not just following some text book.  I hope others can find the same in their GI.  BTW, this GI and my primary care (who I adore) are and have been rated for 10 years, in the top 100 doctors in north carolina by their peer doctors.  I can see why.

While i'm happy that you are feeling well at the moment i would be worried that because you are not on any meds/maintainence at the moment that you may relaspe,i am in remission(no symptons whatsoever) but i continue to take my maintainence.I've heard from so many on here who like yourself came off all meds when feeling well only to relaspe and become worse than ever.It's good that at least both you and your GI are watching things closely,I wish you continued success,Slainte

I don't think anyone has the exact answers, and it sounds like your GI is closely following you. He's not just taking you off your meds and sending you on your way. While it's true that maintenance meds in theory help to prevent a relapse, plenty of us have had relapses while taking the meds. I think you and your GI are thinking everything through carefully, and coming up with a good plan. I hope you continue to do well. If you don't and the Crohn's gets worse, then you can tell yourself you made the best educated choice possible...that's all any of us can really do. My daughter is a science major in college and she is working in a lab doing stem cell research....I keep nagging her to hurry up and find a cure for Crohn's:) Until then, I guess we all have to bumble along.