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Colonoscopy today, and no good news. :(

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Ulcerative Colitis
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Posted 10/14/2020 12:54 AM (GMT 0)
35/m diagnosed at age 30. So I've been dealing with a flare for the past month or so... it's responded well and is under control with prednisone and Uceris foam at the moment.. but last night and today I had to go through the well-travelled Hell that is a colonscopy (#5 for me). As a side note; PLENVU is one hell of a powerful prep... the 2nd jar felt totally overkill, oh my god.

Anyways, my scope today revealed no good news.. after 5 years of disease, my inflammation (which was initially limited to the rectum and L side colon) has now spread to include the transverse colon. My GI is going to decide between now and my follow-up appointment which biologic I'm going to be graduating to. I won't lie, I'm pretty scared and depressed.. I knew that the likelihood of a worsening disease was very high, as it seems to be the normal course.. but it still didn't pad the impact of this kind of news.

I guess all I can hope for now is a good response from whatever drug I move on to.
Posted 10/14/2020 6:11 AM (GMT 0)
If you aren't scared to be on prednisone you definitely shouldn't be scared to be on biologics as they are so much safer.

Entyvio especially is SO safe. But it does take a very long time to start working (13 weeks just to start working, 6 months for full effect), so another biologic might be a better option.

I hope that whatever you and your team choose works soon.
Posted 10/14/2020 1:28 PM (GMT 0)
If your UC is sort of under control with prednisone and not spreading to new areas, then you can afford to wait for something like Entyvio to kick in, as long as you are willing to wait. Entyvio is the safest of all of them and if you have that option I'd go for it. I was on Entyvio for 14 months before it stopped working, and that was after no other biologic worked on me.

I have severe, refractory UC and Entyvio took about 4-6 weeks to start showing results.
Posted 10/14/2020 6:57 PM (GMT 0)
As said above, biologics are much safer than prednisone in the long term. I got severe osteoporosis in my 30s because of prednisone. You can catch it early if you have a competent hospital ( I didn't) and they're doing regular dexa scans. I now live in fear of falling over.
I've been on a few biologics and other immunomodulators over the last 3 years and never had an adverse experience. Entyvio does still affect the respiratory tract and if you look at the data for covid and ibd, the safest meds with regard to coronavirus would appear to be the tnf inhibitors (remicade, humira) and the interleukin inhibitors (stelara)
Posted 10/15/2020 6:47 PM (GMT 0)
I was so upset about being recommended biologics last year. I worried about it constantly, and didn't make a decision for more than six months. My GI was relieved when I agreed. Now, I'm wondering if I even need biologics based on some new information, but after having 4 inflectra infusions, feeling absolutely fine for the first two, and a bit tired for a few days after for the second few, I am absolutely fine with staying on it as long as my doctor recommends. It's funny how my perception changed. I think of it as a me time, when I give my self time to relax and be selfish for a few days. I see the risks, now, as minimal, when I used to think of them as extreme. My number one priority now is to feel well and if inflectra is making me feel better then I'm going to celebrate the biologics!
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