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Is there any alternative to steroids?

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Ulcerative Colitis
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Posted 2/6/2022 9:45 PM (GMT 0)
Hi all, it’s been a tough year beginning with a week in hospital Feb 21 for severe Pancolitis. Steroids by IV switched to Imuran, didn’t work, C Diff twice after hospital, vancomycin to clear that, started entyvio 8 weeks in July but still flaring in November so a course of Budesonide 8mg and upped Entyvio to four weeks. Started flaring after Budesonide finished and now back on prednisone to try to bring this one under control. Dr hopeful that Entyvio actually is doing something as all
of my inflammatory markers are normal and last colonoscopy in November showed improvement (from severe down to mild to moderate in areas)
He wants to keep trying until July. This year I was also diagnosed with osteoporosis in my spine (56 years old) so I really really am worried about steroid use. Is there actually any other alternative (besides surgery) when your meds aren’t working?
Posted 2/6/2022 10:04 PM (GMT 0)
Yes there are other drugs you can try, including stelara and xeljanz. My doctor strongly encouraged me to quit entyvio at the 4 month mark. I have (had?) severe osteoporosis from steroid use (diagnosed when I was 36) and I will chose surgery over steriods in future unless it's an emergency. I take prolia to combat the osteoporosis. I am overdue for a dexa scan so don't know how much it has helped.

Which inflammatory markers? I have always had normal CRP even with severe inflammation in my rectum.
Posted 2/7/2022 1:18 AM (GMT 0)
Hi Poopydoop, curious to know why your doctor advised you to quit Entyvio at the 4 month mark, why was that?

This is one of the biologics they may (hopefully) be giving me soon.
Posted 2/7/2022 5:18 AM (GMT 0)

poopydoop said...
Yes there are other drugs you can try, including stelara and xeljanz. My doctor strongly encouraged me to quit entyvio at the 4 month mark. I have (had?) severe osteoporosis from steroid use (diagnosed when I was 36) and I will chose surgery over steriods in future unless it's an emergency. I take prolia to combat the osteoporosis. I am overdue for a dexa scan so don't know how much it has helped.


Which inflammatory markers? I have always had normal CRP even with severe inflammation in my rectum.

Thanks @poopydoop, 36 is so young for an osteoporosis diagnosis so I understand your reluctance to take any more steroids. Are you in remission now?
I can’t remember exactly which markers but there was improvement in all areas including CRP since being hospitalized with Pancolitis a year ago so Dr is thinking that the flare may now be confined to the rectal area. I guess what I’m asking is that my specialist seems to pull out the steroids as a default to calm the flare and give the meds a better chance of working so I feel like there is no other option especially if I start to flare again and he wants to clear things up before switching to another med.
Posted 2/7/2022 8:43 AM (GMT 0)
Hi 1Wish: I had a partial response to entyvio and was able to get off prednisone, but my dr felt if it was going to put me in remission I would be feeling better at 4 months than I actually was. I guess that was just based on his experience. At that point the inflammation was confined to the rectum (my initial diagnosis was pancolitis) and he said probably I'd keep chugging along like that indefinitely...but my quality of life wasn't good enough. I actually arranged with him that I would switch to xeljanz 2 weeks after my last infusion and because xeljanz works quickly, he agreed i could go back for my next entyvio infusion if i wasn't getting a response to xeljanz (which i never did).

Mariposa yes I am in remission thanks to xeljanz. Just had my 3 year anniversary. Drs have different opinions about steroids but I don't think they affect the chances of a drug working (in fact I'm sure I've read things about prednisone inhibiting healing), it's more about making life comfortable while you wait for a drug to work. I switched hospitals/doctors because I was on prednisone for 2 years and fed up of being bunged on that as a tool to feel comfortable (at the point when i switched i was on infliximab, and before entyvio)

Entyvio is slower working for crohns but for UC the recommendation is usually 4 months.

It's probably helping you somewhat but that doesn't mean it will put you in a remission. If you're not happy with extended steroid use i would consider asking for a 2nd opinion if that's an option.

There is also budesonide which is mostly absorbed topically so has fewer systemic side effects.

I can't remember your dosage but have you tried 4 weekly infusions rather than 8 weekly?

Take care
Posted 2/7/2022 10:18 AM (GMT 0)

poopydoop said...
Hi 1Wish: I had a partial response to entyvio and was able to get off prednisone, but my dr felt if it was going to put me in remission I would be feeling better at 4 months than I actually was. I guess that was just based on his experience. At that point the inflammation was confined to the rectum (my initial diagnosis was pancolitis) and he said probably I'd keep chugging along like that indefinitely...but my quality of life wasn't good enough. I actually arranged with him that I would switch to xeljanz 2 weeks after my last infusion and because xeljanz works quickly, he agreed i could go back for my next entyvio infusion if i wasn't getting a response to xeljanz (which i never did).

Mariposa yes I am in remission thanks to xeljanz. Just had my 3 year anniversary. Drs have different opinions about steroids but I don't think they affect the chances of a drug working (in fact I'm sure I've read things about prednisone inhibiting healing), it's more about making life comfortable while you wait for a drug to work. I switched hospitals/doctors because I was on prednisone for 2 years and fed up of being bunged on that as a tool to feel comfortable (at the point when i switched i was on infliximab, and before entyvio)

Entyvio is slower working for crohns but for UC the recommendation is usually 4 months.

It's probably helping you somewhat but that doesn't mean it will put you in a remission. If you're not happy with extended steroid use i would consider asking for a 2nd opinion if that's an option.

There is also budesonide which is mostly absorbed topically so has fewer systemic side effects.

I can't remember your dosage but have you tried 4 weekly infusions rather than 8 weekly?

Take care


I’m down to 10mg on my second taper. I don’t want to do another course if I flare waiting on entyvio would budesonide be a better option if I do get worst waiting. My GI still has me on 2x2.1g mezavant which is doing nothing. I’ve even increased to 4x and same no improvement from mezavant at all so not sure why he keeps me on it at this point.
Posted 2/7/2022 2:43 PM (GMT 0)
I quit Entyvio around 4 or so months, too. I couldn't get off steroids the whole time I was on it. If I was in your shoes, I'd ask about moving on to another drug, like Xeljanz or something. You've been on it 7 months and are still flaring. For me, it wouldn't matter if there was some improvement. I don't think after 7 months, it would improve more, but does your doctor think so? Plus, it sounds like you've had a lot of courses of steroids while you've been on it, so that makes it hard to even know if your improvements were from steroids or the actual Entyvio. I was stuck on budesonide for a long time. That was at least a better option than prednisone, so if you can swing things with that while waiting on a safer med to work, that would be one option. I'm sorry to hear you are going through all this! It's so frustrating when medicines don't work and we have to wait so long to find out if they will, too. Sorry about the c diff, too! I was hospitalized for that in 2016 and it was very painful!

I am just on the cusp of osteoporosis too and I'm only 38, so I totally understand the concerns! I have it in my right hip but nowhere else so far.
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