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Crohn's Disease
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Posted 1/22/2014 1:05 PM (GMT -5)
Through phone msgs my dr has relayed that if I believe humira is the cause of my symptoms and/or upper resp illnesses that my ONLY option is cimzia. I don't know if it's because she doesn't think it's the humira (which she doesn't) or because she thinks the other meds are a waste of time. Me, though, I really want to take a break from the biologics and see how I would be on a 5-ASA. If it doesnt work, I could consider cimzia then. Maybe that's silly but I've been on 2 antibiotics and pred in 2 months and I don't think it's a coincidence that I feel much better (can breathe no hot flashes) the further I get from taking it. I also feel like cimzia is just another form of the same thing. I work with the public and my kids are always bringing home something so my immune system is shot. I don't want to get labeled as a pain or have her refuse to treat me because there are only two kinds of drs around here. The big guns who love biologics and the more timid who will never ever prescribe one. I'm so aggravated and so now I'm on nothing. Any words of wisdom?

Post Edited (bloated) : 1/22/2014 11:08:58 AM (GMT-7)

Posted 1/22/2014 3:06 PM (GMT -5)
Hi bloated,
I think this is an impossible conversation to have via phone messages at your GI's office. Is there any way you can make an appointment and speak with her face to face? Your GI may believe that your Crohn's is too severe to be treated with 5ASA's, and the current research does seem to indicate the they are no better than placebo. But it is YOUR body, and you should be the one to make this decision. I think if you tell your doc that you believe she may be right, but you want to take a break from the biologics to see what happens, it is possible that she will be receptive. I am still only on Pentasa, but I do have symptoms daily, so I have know idea if I am making the right choice. It is a difficult disease and you need a doc that allows you to use your own reasoning and instincts. If your labs are currently stable, it may be a good time to try it. We all struggle with treatment choices in one way or another...you are not alone in this!
Posted 1/22/2014 3:21 PM (GMT -5)
I understand how you feel as it's a real problem that can lead to worse problems when having a compromised immune system. Sometimes I felt that my GI didn't appreciate the seriousness of that, but I know some of it comes from the fact that all these treatments are fraught with side effects. It's hard to weigh side effects which can be deadly against disease which can be deadly also.

I've experienced the same thing with GIs and biologics. The GIs I've gone to either insist on the biologics or hate them. I revisited the first GI I had ever seen because I was needing to get a dr. closer to home and he was 45 miles closer to me. My reasoning was that I wanted to finally try Remicade, but I needed to be closer than the 85 miles I was having to travel to my then GI. He accused me of dr. hopping and told me he doesn't prescribe any biologics and wouldn't treat me since I was already on 6-mp which he detests.

I never did go on any biologics because I dropped my insurance for 2 years and what I have now has huge deductibles with basically no drug coverage.

I do have experience with 5-ASAs since I took the stuff for nearly ten years. I had better results with the enema form since mine is mostly in the colon. The Asacol I took for so long probably did help because I don't recall ever having bleeding while on it. I've been off of it for ~5 years now and do experience bleeding. The one thing is that my extraintestinal symptoms never improved while on Asacol. I've had nonstop arthritis whether on it or not. Research results several years ago showed that Asacol wasn't that effective with Crohn's. I had a side effect from it in that my skin would tear instead of stretching which became a big problem. That was one reason I stopped using it. -Joy
Posted 1/22/2014 4:21 PM (GMT -5)
My doc tells me that biological are like cruise missiles and asacol is like a .22 I had asked him about stopping asacol and he asked me if I ever had and I reacted. I've been on it for years but don't think it does much other than cost be the $150 co-pay every month. So I'm going to stop as soon as I finish bottle. If your doc won't listen maybe go see another gi? I read other people's doc issues and realize how lucky I've been in that regard. They always seem to listen and let me try what I want (within reason of course). The only time a doc said Absoutely no is my past gi at mayo regarding pain Meds. Even though I was spending hours curled up in the fetal position on the bathroom floor crying and puking bc the pain was so bad he didn't care. Said when we get the disease under control the pain would stop...ya think? Anyway I had to switch anyway bc ins changed but that really made me mad. He would rather I be debilitated and suffer with extreme pain than rx medication that would help me live, work and play with my daughter. I added a pain doc to my repertoire and lo and behold. I was able to spend time off of the floor! Go talk to doc face to face, have your thoughts/arguments well laid out and hopefully s/he will be able to "get it". If not then seriously- look for a new gi that understands you are the patient, you have a vested interest in your care and you want to try going in "this" direction. If it doesn't work you can always try sething else. With crohns what works for me may or may not work for you. Docs shouldn't arbitrarily discount anything until it is tried on Thst specific individual.
Posted 1/23/2014 8:09 PM (GMT -5)
Thanks all, I made an appt for a few weeks from now.
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