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I've had a J-Pouch since 1990. All that time, I've had a lot of difficulty with frequency and food and often these strange periods where the pouch "wouldn't work" and I'd have cramps and everything just like UC. A couple years ago, during a pretty bad spell, I had this new test and they determined that I have Crohn's. I've been on Entecort for a couple years and it's been wonderful. But the effects have worn off and I'm having a lot of trouble.

My doctor has suggested we step up treatment to biologics.

Does anyone have experience with this. The side effects are pretty intimidating to consider, but the alternative, well, I'm not sure there is one.

Thanks for any help,
Gary

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I've been on biologics since 2005, for arthritis not IBD. I can tell you that, for me anyway, it has been a godsend treatment. Yes, it does not completely eliminate my inflammatory arthritis, but it has made a huge difference in my overall functioning. It also seems to ave improved my pouch function too (although I never have been diagnosed with Crohn's).

The potential side effects can be scary, but understand that they are not likely. I get blood tests every three months faithfully, and my liver function tests and blood counts have done nothing but improve. I have not even had minor side effects.

My feelings were that the risk of side effects were far outweighed by the benefit of living a more normal life. I know that should I develop liver infammation, bone marrow suppression, lupus, or congestive heart failure due to biologics, I will have to stop taking them, but at east I will have had these years of improved functioning, and that means the world to me. The most recent studies indicate that the much feared associated risk of lymphoma is really no higher than the general population, except for those with rheumatoid arthritis, and they are already in a higher risk group.

The biologics I have taken are Enbrel, Humira, and now Simponi. I never tried Remicade.

Jan Smiler
Jan Dollar
Jan,
Thank you for getting back to me so quickly.
Which medication do you take? I've been researching the infusion and the injections and feel that with all the traveling I do, the injections will be easier to deal with, like Humira/Remacid? Also, I've learned that the infusion is very expensive. I worry, too, about what happens if one of them doesn't work. Can you switch to the other.
Thanks again,
Gary
G
I take Simponi, but I don't think it is approved for Crohn's (yet, but phase 3 trials indicated efficacy in UC). I like it because it is once monthly injection.

Remicade is by IV infusion only, every 4-8 weeks. Also, it is mouse protein based, so more likely to cause allergic reactions and antibody formation (reducing effectiveness over time). Still, it has been around the longest, so has the most data.

Humira is approved for Crohn's, but treatment is every other week, weekly for some (I had to take it weekly when I was on it). Rather than deal with it when traveling (refrigeration required and pecial screening in airports), I just skipped a dose and took it as soon as I returned home. This worked out fine.

Studies have shown that you can move from one to another successfully, if one loses effectiveness over time, or does not work at all.

Jan Smiler
Jan Dollar
Last edited by Jan Dollar

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