grumpy at my dr...

I had a follow up with my dr today. He basically told me what I was afraid he'd say: Discontinue the Remicade because it's a failed medication on you. After only 3 infusions, I still don't think it's enough time to see whether or not it's going to help. His only basis was that my flare got worse and chopped it up to me being a rare case where I develop antibodies really quick, and if that's the case then neither Cimzia or Humira will work on me either, and more than likely prednisone won't help control symptoms either. which leaves me with what? I've tried imuran, 2 different 5-ASA's, prednisone, probiotics, antibiotics, diets, and Remicade. So I suggested doing a combo with the Remicade (wanted to stay clear of 6-mp and imuran since I had a reaction to imuran) so we're giving it 2 weeks to see if my last infusion will kick in before I start a short burst of prednisone. But he was cautious to do even that because of the increased risk of infection, which I understand. I am getting at least one more dose of remicade, I did convince him to do that much. I basically feel like I have no options right now.

I'm debating on getting a second opinion from a dr that is not associated with the clinic I go to. Ever since I switched dr's from the one location (it's all the same clinic, just different locations) I feel like whenever I go it's to get me in and out as quickly as possible. The dr is constantly having to move my appointments around on me, 3 out of the last 4 were moved last minute due to him needing to leave the office sooner, which puts me at either scheduling it during my daughters nap time (yeah, not so fun) or moving it out a few more weeks which doesn't help me either. He never does a physical exam when I'm there (my first dr would do it every appointment to check on my abdomen to feel for inflammation) Even saying I was going 10+ times with all of them being bloody D and mucous enough to look like brain matter (sorry, tmi), didn't even phase him and he looked at me like I'm just faking it. Then this appointment he had to leave the room for a minute to answer an urgent call from a surgeon, then he came back in a minute later and bad mouthed the surgeon before apologizing to me. *sigh* idk, I'm scared to find another dr, I'd like to go back to my first dr, but I think it would look bad to change drs at that clinic 3 times in the last year (1st dr, then switched locations as it was closer to home and saw 1st dr's np, then switched to this dr when I was taken off imuran) The only thing going for him is that the staff there is really nice.

Guess I should just thank my lucky stars I haven't had any surgeries, fistulas, abcesses, or blockages.

sounds like an absolute atrocious mess.

Steer clear of these "clinics". location really should be the least of your worries. establishing a great and long-last relationship is #1. i've come to realise that that in itself can be more in important than medicine. if you're bouncing all over the place, DR. to DR. you're right, it does not look good on your part.

hope it shakes out for you and you find a DR. you can see eye to eye with. try to get in w/ a GI who is in the same "system" as your PCP, Rheumy, Gyno, Opthamoligist, Neurologist, etc etc. that way all your records are together in one place and they can be pulled/accessed easily anytime. that works out pretty well for me.

What a mess! I do hope you can find another option for treatment. There are just way too many red flags with the way you are being treated.

I would be shocked if you had already built up antibodies after 3 treatments. What dose and frequency are you on? Most people start at 5 mg per every 8 or 12 weeks but that is a really small dose that does not work for everyone. I only found the 10 mg every 4 weeks to work for me. I am also concerned that he would stop after only 3 infuisions without you having a bad reaction. 3 doses is typically your loading stages and it takes up to 6 doses after that to really reach full potency. There are so many combos and dose of the remicade that could be attempted before calling it a failure. Has your G.I. used remicade a lot in the past with other patients? I also find it weird that he said that Cimzia and humira would not be effective without even trying them. Even though they are all TNF inhibitors, Cimzia and humira do not have the rodent DNA in them and are less likely to have you build up antibodies in them. They both use human protein.
I would definitely seek out another opinion from someone not associated with their clinic. There are plenty of other G.I,s in Utah County or SLC area that could give you a second opinion. If your doctor gets upset with that, that means that he is insecure and you were right in looking for someone else. Hit me up on fb and I can give you a couple names down in the SLC that you may want to try. If you are willing to travel a ways, my G.I. is awesome and very straightforward. She is really knowledgable and has a lot better bedside manner than the male G.I.s that I have seen. Sometimes you have to go through a few doctors before you find the one that is right for you.

Yeah...I'd be looking for a new doctor. DH had a severe allergic reaction to Remicade yet he has been taking Humira for 3 years without any reactions, (knock on wood!). Has the Humira put him in full remission, no but it does keep the fistula output down to a controllable level.