1. Research has shown that you have a good chance of responding to Cimzia even though you have failed Humira. I agree the shots are tough and it would be at least a month and maybe 2 before it was clear whether it was working.
2. The biggest danger, as I understand it, to re-starting remicade is the risk of a severe reaction because you were sensitized to the med years ago. You might ask your doc about
testing you for remicade antibodies but the results are not always real clear so they may not help much.
3. If 6-mp worked for you except for liver problems, why hasn't anyone put you on Imuran combined with Allopurinol??? This combo has been shown to be effective for many people who either cannot reach therapeutic levels on 6-MP or who are having liver toxicity at therapeutic levels of 6-MP. Biggest problem is that you would have to wait several weeks to 4 months to know if it is working. Given how sick you are, that's not good.
4. Have you tried or are you willing to try exclusive enteral nutrition for at least 2 weeks? You don't eat regular food or drink anything except formula and water, maybe a little 7up. You get your nutrition from either OTC products like Boost or Ensure or from prescript
Many people experience significant relief of their symptoms in as little as 2 weeks. For my son it was 5 days.
It is as likely to put you into remission as prednisone without the side effects and it promotes healing of your gut and improved nutritional status.
5. You can live OK without your colon. But if you have no colon and have lost a good portion of your small intestines you are very likely to develop short bowel syndrome. This is always a danger when you have CD with small intestine involvement who may need surgery to treat blockages, abscesses, etc.
I have a younger sister with severe short bowel syndrome. She is in intestinal failure and is dying. She is only 43. It is very sad and I feel obligated to make sure people know about
I don't mean to blow this out of proportion. I know there are lots of CDers who have had their colon removed and do just fine. But I think you may want to ask your doc if he has any concern that this might be an issue for you in the future.
6. Might look into LDN and ask your doc about
this med. It's on the market to treat other things but is in clinical trials to treat CD.
7. Methotrexate? My son is on this and it is holding him in remission so far. Usually administered by shot once a week but we are doing oral MTX. In your case I am real sure they would want to do shots at first and might be able to switch you to oral if you went into remission. MTX works a little faster than Imuran/Allopurinol combo but not usually much faster.
8. Xifaxan - new antibiotic that is working really well for a lot of folks with CD especially if they have SIBO. Some insurance companies don't want to cover it since it is an off-label use.
I sure hope you find something that works for you real soon.
son now 14 1/2, dx CD age 10; current meds: MTX and omeprazole; previous tmts: pred, 6-MP, Humira, entocort, GMCS, exclusive enteral feeds, pentasa, mesalamine enemas, cipro, flagyl, many topical treatments for perianal disease
Post Edited (rlsnights) : 9/19/2010 10:18:17 AM (GMT-6)