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Crohn's Disease
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Posted 11/11/2010 5:03 AM (GMT 0)
Hey all--

I was diagnosed with Crohn's in 2005, but probably had it since 2000. It's been a struggle to get it under control since then. On one hand, I think I'm very fortunate to have a mild/moderate case, but I'm just incredibly sensitive to medicine. I went on Humira in April, but have had increasingly worse joint pain and fatigue, so my doctor stopped it. It was quite effective for my Crohn's, and for the first time in 5 years I haven't had to worry about where a bathroom is, but the joint pain just got unbearable. I seem to have some sort of intolerable reactions to a lot of the meds: entocort, humira, prednisone, 6MP, and sadly pentasa and asacol didn't help enough.

Today I saw the GI, and he said we could do surgery or try remicade. I'm nervous about remicade. I know it's helped a lot of people, but the joint pain from the humira was horrible, and I don't know if I even want to take a chance with trying something else. The more I think about it, the more I'm tempted to pursue a resection. I feel a bit rash for even considering it without trying remicade, but I'm exhausted from the prednisone for a month and then the humira for almost 6 months. It's kind of sad that the recovery from surgery seems more doable than potential side effects from remicade. Any advice?

Sarah
Posted 11/11/2010 5:43 AM (GMT 0)
There's a third and fourth option - dietary change and/or LDN. My daughter's doc, today, said he thinks the SCD diet works best for patients who do not tolerate meds -- or sometimes even supplements - well. 

Whatever you choose to do, good luck! The problem with surgery is it's a temporary solution. The Crohn's can come back almost immediately. It doesn't solve the problem of needing to find an effective maintenance med and/or diet. 

Posted 11/11/2010 3:15 PM (GMT 0)

Sarah, Remicade is used for arthritis, so it could actually help with your joint pain.  I haven't heard any statistics on how likely it is for Remicade to cause joint pain if Humira did, but I think it's worth trying it.  Or, try Cimzia and see if that works without causing joint pain, since it's easier to deal with than Remicade (do it at home, just an injection vs IV, your $ is probably cheaper). 

Posted 11/11/2010 6:32 PM (GMT 0)
I took Remicade for 2.5 years. It was originally prescribed to treat the inflammatory arthritis problem. My Crohn's was classified as mild. The Remicade worked like a charm on both the arthritic problem and on the CD. My guts went into remission and have stayed that way for 6 years.

When the Remicade stopped working to control the arthritic problem, I was switched to Humira. At the 2 month mark on Humira, 2 days after an injection I suffered a reaction that landed me in the ER. I had such horrid joint pain that I could not walk without assistance.

Everyone reacts differently to different medications. You might do well on Remicade. The only way you will know is to try. Surgery in the permanent removal of a portion of your anatomy. Removal of certain parts of the small bowel can create new concerns for some people. On the other hand, doing surgery now without trying Remicade might give you a long remission. Also, you would then have Remicade to use should the Crohn's return. And there is the quality of life factor. It's a big decision for sure. All the best....
Posted 11/11/2010 6:49 PM (GMT 0)
What about LDN (low dose naltrexone)? At the moment I just started taking prednisone yesterday so I'll wait to see how it works but next step I'm going to try LDN...maybe it'll work for you
Posted 11/12/2010 3:16 AM (GMT 0)
And what about Xifaxin?
Posted 11/12/2010 4:44 AM (GMT 0)
Thanks for the suggestions, and giving me a few other things to think about, and talk to my GI about.

The Humira caused my joint pain, which is started to subside as the Humira gets out of my system. It's been a rough year trying different medications and having a lot of severe side effects. I wish there were a magic test so the docs could know if you are going to tolerate a medicine or not!! It would certainly make life easier. :-D

Sarah

Posted 11/12/2010 2:55 PM (GMT 0)
Keep wishing, SparklePlenty. Researchers are even now actually searching for genetic markers that may help w/determining who might respond better to one drug than another.
Posted 11/12/2010 4:09 PM (GMT 0)
I have more comp's from 8ft of small bowel removal than the cd itself. dumping syndrome, dehydration, among a few of the issues, surgery can give you remission until it comes back. my surgerically induced remission lasted me from 5 years to 20 years of remission.

Posted 11/12/2010 6:42 PM (GMT 0)
I would also wonder about tybrisi and cimzia
Posted 11/14/2010 10:05 PM (GMT 0)
I tried Remicade and it worked great for my stomach, but not for my joint pain. Then I tried Cimzia, which has worked well for both. We didn't expect it to help with the joint pain so much but it did. Everyone is different, you just have to try for yourself. I would definitely try meds before surgery, bc that is permanent. Good luck to you!
Posted 11/14/2010 10:18 PM (GMT 0)
Did you doc try methotrexate or 6 mp in combination with your humira? Methotrexate is used by a lot of rheumys to treat arthritis and when I used it in combo with my remicade it was amazing. I would still be on it but I have fatty liver that does not like the combo.
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