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Xeljanz for UC--making its way...thoughts?

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Ulcerative Colitis
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Posted 3/19/2016 4:25 PM (GMT 0)
Are others following the progress of Xeljanx for UC?

http://news.yahoo.com/pfizers-xeljanz-meets-goals-ulcerative-colitis-trials-170322465--finance.html

Perhaps someone else has read the journal articles (I haven't yet); I'm wondering whether the long-term side effects (especially the vulnerability to lymphoma) are any better with this new drug. Obviously, taking a pill twice a day is preferable to getting infusions, but Remicade is working great for me so far. I don't plan to change anything now, but it would be helpful to know if the new med is "better" for you in the long run. That might be a reason to try it at some point. I don't think it's actually approved for UC yet but some docs are giving it off label and I guess it will be officially "okay" sometime soon.

Fight the Flare!
sillyguts
Posted 3/19/2016 8:10 PM (GMT 0)
I've heard Xeljanx has a risk of stomach bleeding. I'd assume it also carries the same risks as remicade (same class of medications) .

Entvyio is safer than the other biologics, it's site specific and less likely to create as many side effects.
Posted 3/19/2016 10:16 PM (GMT 0)
I don't have any opinions based on research. The only opinion I have is from my GI who had a lot of patients in the trial and said she wasn't seeing great results at all. Hopefully the results from the trials are better overall. She wouldn't send someone into the trial for xeljanz unless they had failed everything, and often those types of resistant cases, have a very low chance of response. Perhaps results of a trial with a group of normal UCers would give more hope.
Posted 3/19/2016 11:21 PM (GMT 0)
Hmmmm...that's too bad. And the more I read, the more I see that it has the same scary side effects (e.g., vulnerability to certain cancers). I guess we'll have to wait and see. As I said, I'm lucky because Remicade is working for me (knock wood) but I'm always on the lookout for the next option in case it fails. I'll have to look into Entvyio! Thanks.
Posted 3/20/2016 12:01 AM (GMT 0)
Here's an excerpt I read about entvyio "Recently compiled safety data from all clinical trials on Entyvio (vedolizumab) for patients with inflammatory bowel disease (IBD) show the drug is associated with low rates of new serious infections, infusion-related reactions, and cancers."
Source: ibdnewstoday.com/2016/03/04/good-long-term-safety-of-entyvio-in-ibd-patients/
Posted 3/20/2016 1:51 PM (GMT 0)
Thanks for sharing that--that's great news. I wonder, though, if people recommend changing course if what you're doing is working. I'd certainly like to reduce my cancer and infection risk but it would be awful to change drugs and find the new one doesn't work for me. And who knows if Remicade would work less well after being off of it for a while...hate to mess with a working system.

Anyway, thanks so much for the info.
Posted 3/20/2016 3:02 PM (GMT 0)
ya, don't have any experience with the Big drugs or much knowledge -

just wondering how the SCD has worked for you - any improvements ?
Posted 3/20/2016 3:22 PM (GMT 0)
I only did SCD for about 6 months and didn't see any real change. However, it's hard to tell if the diet had an effect because the Remicade works, so I don't have symptoms that get better or worse...does that make sense? If I were doing nothing but changing my diet (no meds), perhaps SCD would help, but as long as the meds are working I'm pretty "normal" and can eat whatever.

However, I still avoid processed food, really spicy food, greasy stuff, etc. I'm a healthy eater overall and always have been. I'm not sure that my UC has anything to do with food, to be honest. But I still believe in eating well and skipping junk food, fast food, etc. I'm actually trying to cut WAY back on sugar/starch now, for overall health and a little weight loss. But unless I go off Remicade and try diet alone, it will be hard to say if any particular foods are a trigger.

Looks like you eat very healthy food yourself and that you aren't on a major medication. Is that working for you? Hope so!!
Posted 3/20/2016 3:25 PM (GMT 0)
I'd say stick with what's working: if it isn't broke don't fix it. You are correct entvyio may not work for you, there's no guarantees. I'd keep that entvyio in mind, should remicade stop working for you.
Posted 3/20/2016 3:31 PM (GMT 0)
Yeah, I think that's good advice. Before Remicade I spent 2 weeks in the hospital and got down to 89 pounds...was never so sick in my life. It took a while for the docs to get things under control. I built up some antibodies to Remicade early on so they added Imuran. The combo is magical for me. Fingers crossed it stays that way.

Hope everyone is having a flare-free day...!
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