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When to switch biologics?

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Ulcerative Colitis
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Posted 9/6/2015 11:42 AM (GMT 0)
Since my endoscopy didn't turn up anything, my GI has decided that my throwing up must just be a side effect of the Simponi, and wants me to start on something else. I'm on a clinical trial for it right now, which began last October - since then it's been approved for use in the UK, so when the trial ends I could continue it if I wanted.

But it seems an awful shame to discontinue the Simponi when my UC isn't all that bad right now. about 5 bms a day, blood increasingly frequently, but no urgency, flex sig showed only mild inflammation. The throwing up is awful because it's acidic bile and always in the middle of the night, but it's not thaaaat often. I'm not lucky with medications, so I want to milk Simponi for all it's worth - I'm still young and I want to keep some options in the bank. Plus I love the convenience of the injections, can't afford to take a day off every few weeks for an infusion. So...:

1. Do you think it's worth stopping the Simponi? (I know I've got to decide myself how much the throwing up bothers me, but I'd just like to know what other people would do).

2. If I do switch, Remicade or Entyvio?

When I saw my GI on Thursday she sighed and said 'you're not the easiest patient are you?!' I'm so sick of never really being in remission. Any thoughts appreciated!
Posted 9/6/2015 2:38 PM (GMT 0)
Of course you have to decide what's right for you, but I personally would not stay on a biologic if it wasn't keeping me in remission AND I was having a negative reaction to it. Needless to say, it doesn't sound like Simponi is working if you are inflamed, bleeding and vomiting.

I think Remicade out of all the biologics has the most history and one of the higher efficacy rates out there. So if you want to try another biologic, maybe Remi. Some infusion centers are open on Saturday mornings; if you don't work then, maybe that time slot would be an option for you.

As an aside - I think your GI's comment was inappropriate. She is your doctor -- it's her job to be your health advocate, meaning she should be eager to help you find the right treatment option that works for you. Not inferring that you are difficult.
Posted 9/6/2015 2:44 PM (GMT 0)
Have you tried Zofran? It's an anti-nausea medication that is fast acting.

Remicade worked the best for me out of the 3 biologicals that I used, Simponi and Humira weren't nearly as effective for me.

From your post your last line stands out to me that you really want to be in Remission and that is the most important thing to you and Simponi isn't doing that for you. If your making a decision based upon that then you probably want to try something else that might put you into remission.
Posted 9/6/2015 4:46 PM (GMT 0)
Doesn't sound to me like the simponi is working well at all. If you've been on it since last October you should be in better shape than what you're describing. I would go with Remicade next if you have a choice.
Posted 9/7/2015 12:13 PM (GMT 0)
Thanks everyone. I guess I thought myself to be in semi-remission, but writing it all down, maybe I'm not doing as well as I thought. Today I was in such pain I even though that getting surgery wouldn't be the worst thing in the world.

Also I don't think my GI meant anything mean by the comment - it's true, I haven't been easy, intolerant or unresponsive to everything I've tried in the last two years.

I think I'm going to stick out the simponi trial either way. That's two more injections. She's keen on entyvio but I think I'd rather try infliximab first? I'm not sure why, gut feeling. Maybe to tick off all the traditional biologics first.
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