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About to Give In to Biologics

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Ulcerative Colitis
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David1991
Regular Member
Joined : Apr 2012
Posts : 263
Posted 2/11/2021 4:13 PM (GMT -7)
I know many here have no issues with biologics. I've done everything I can to avoid them but now it's starting to feel like I have no choice. I don't have much pain, just mild discomfort (used to have much more pain) but I bleed all the time now. The last 2-3 years I've bled a lot. Uceris foam has helped a little, Uceris oral tablets helped a lot the first time but less after that. Dietary changes have historically helped but now even that seems to be not enough.

I take Lialda (mesalamine) 4.8g per day, Rowasa or Canasa (mesalamine) enema nightly, and recently have been taking Uceris foam which seemed to help when I was doing it twice per day but when I switched to once a day I was bleeding again. I even did a 72hr fast that ended last night and while I felt great during the fast I bled again today.

I'm taking the max dose of mesalamines both orally and rectally, I'm taking a corticosteroid enema, I'm following the Specific Carbohydrate Diet (SCD). I do have occasional cheats when I go on trips but honestly even when I was 100% super strict to a T with the diet for 4-5 months I still had some issues (stool lined with blood and some diarrhea).

Supplement wise I take curcumin (BCM-95), fish oil, ashwaganda, vitamin D, a few others I consider less relevant for IBD.

I've been considering Entyvio the last 1-2 years. It seems I might have to make that jump. I guess the lack of pain has made me really resistant. AND even though I was bleeding I didn't have that much inflammation during my 2019 colonoscopy, it was mostly proctitis at that point so we just went to the suppository (something I've used plenty in the past but got away).

I guess I wanted to get some thoughts and see if there's anything else I'm missing that I could try before giving in to using Uceris. I did a fully carnivore diet for 1 month and didn't bleed at all, but my cholesterol was horrible and I don't think that's a great diet super long term.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 929
Posted 2/11/2021 4:44 PM (GMT -7)
You might want to rethink ashwagandha as it stimulates the immune system and therefore potentially aggravates autoimmune conditions.

I had a lot of fear before starting biologics but once you're on them it doesn't feel like such a big deal..

Steroid enemas thin the wall of the colon and should not be used long term..
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 916
Posted 2/12/2021 8:58 AM (GMT -7)
Been on entyvio 4 years next month. No side effects. No symptoms. Yes I was very VERY hesitant to go on it. Worried and depressed. Put it off as long as I could. After I got to remission I wondered why I waited so long. I’m not more sick than before and haven’t had any issues with increased infections. The other thing to consider is what uncontrolled inflammation can do to your gut. I do believe it’s good to do everything you can to heal before going on biologics because there’s no going back once it’s began and you don’t want to have regrets But sound like you’re at the point already and now should think about if resistance is worth it in the long run. After being miserable for a year I can tell you that it wasn’t for me and remission is so sweet.
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Lili35
Regular Member
Joined : May 2020
Posts : 41
Posted 2/12/2021 9:19 AM (GMT -7)
I am on a similar regimen as yours: max dose of mesalamine and SCD. I have been on SCD for 8 years and I have to say it used to work a lot better than it does now. I am not exactly sure why. I was given a supplement that contains ashwaganda by my naturopathic doctor in the spring for fatigue, but it made my symptoms worse. I am also have low grade persistent inflammation and am wondering what to do next. I have been on Remicade before and didn't really have issues, even though it's scary.
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David1991
Regular Member
Joined : Apr 2012
Posts : 263
Posted 2/12/2021 11:38 AM (GMT -7)

poopydoop said...
You might want to rethink ashwagandha as it stimulates the immune system and therefore potentially aggravates autoimmune conditions.

I had a lot of fear before starting biologics but once you're on them it doesn't feel like such a big deal..

Steroid enemas thin the wall of the colon and should not be used long term..

I've heard that about ashwagandha but never saw any studies confirming it. I get mechanistically it could be an issue though. Can't say I've noticed a difference when starting or stopping.

Can you provide any source citing that steroid enemas thin the wall of the colon? Not doubting you, just interested to see the data. I just stopped last night, so 4 weeks.

FlowersGal said...
Been on entyvio 4 years next month. No side effects. No symptoms. Yes I was very VERY hesitant to go on it. Worried and depressed. Put it off as long as I could. After I got to remission I wondered why I waited so long. I’m not more sick than before and haven’t had any issues with increased infections. The other thing to consider is what uncontrolled inflammation can do to your gut. I do believe it’s good to do everything you can to heal before going on biologics because there’s no going back once it’s began and you don’t want to have regrets But sound like you’re at the point already and now should think about if resistance is worth it in the long run. After being miserable for a year I can tell you that it wasn’t for me and remission is so sweet.

Wow 4 years of full remission is great for a biologic, seems like a lot of people develop immunity to it quickly.

Have you changed your diet at all or do you eat whatever you want now?

Lili35 said...
I am on a similar regimen as yours: max dose of mesalamine and SCD. I have been on SCD for 8 years and I have to say it used to work a lot better than it does now. I am not exactly sure why. I was given a supplement that contains ashwaganda by my naturopathic doctor in the spring for fatigue, but it made my symptoms worse. I am also have low grade persistent inflammation and am wondering what to do next. I have been on Remicade before and didn't really have issues, even though it's scary.

Yea it seems like everything becomes less effective over time :\

Why did you stop Remicade?
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Lili35
Regular Member
Joined : May 2020
Posts : 41
Posted 2/13/2021 9:19 AM (GMT -7)

Yea it seems like everything becomes less effective over time :\

Why did you stop Remicade?

I stopped using Remicade a few months after starting SCD to see if I could manage my symptoms with only SCD. It worked for a few years and eventually I had to start taking mesalamine. Even though the diet is not working as well as it did before, I used to have a severe case of pancolitis before the diet, and now my flares are very mild in comaprison.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 929
Posted 2/13/2021 10:15 AM (GMT -7)

David1991 said...

Can you provide any source citing that steroid enemas thin the wall of the colon? Not doubting you, just interested to see the data. I just stopped last night, .


I could but I'm sure you're smart enough to do the research yourself smile
A quick google for "topical steroids long term" gives you an idea.
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tiredofallthispoop
Regular Member
Joined : Jan 2017
Posts : 213
Posted 2/13/2021 10:48 AM (GMT -7)
Fish oil makes me bleed. Maybe eliminate that.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 916
Posted 2/13/2021 11:11 AM (GMT -7)
As far as entyvio and remission — I eat anything I want. I do note that sometimes too much sugar will affect me but it’s not every time. I haven’t eaten beans for years because of diverticulitis— also popcorn and raspberries. I find broccoli gives me gas which is still sometimes painful so I avoid that. Also can’t forget the pain from eating it when I was flaring years ago.
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 141
Posted 2/13/2021 1:03 PM (GMT -7)
I am at the same point. In a flare since December and don't want to go down the prednisone road again after 57 years with UC. I am currently maxed out on Lialda (4 tabs) and Rowasa enemas every night over the past 3 years. 2/1/2 years ago did the 60 mg of Pred with taper that took 7 months. Big issue I have now about both Pred and Biologics is my age (73). Tough decision. I would think Uceris would be safer than the 40 mg of Pred and worth a try. Tried that 1 time but did not help. Good luck.
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David1991
Regular Member
Joined : Apr 2012
Posts : 263
Posted 2/13/2021 6:54 PM (GMT -7)

tiredofallthispoop said...
Fish oil makes me bleed. Maybe eliminate that.

If fish oil is making you bleed I imagine it's due to the blood thinning (generally healthy) properties of it. Not that it's making the disease worse.

Lili35 said...

I stopped using Remicade a few months after starting SCD to see if I could manage my symptoms with only SCD. It worked for a few years and eventually I had to start taking mesalamine. Even though the diet is not working as well as it did before, I used to have a severe case of pancolitis before the diet, and now my flares are very mild in comaprison.

Yea I would agree that while the diet hasn't put me in remission it does help compared to a standard american diet. Sometimes hard to tell if it's helping more than just a generally healthy diet though.

FlowersGal said...
As far as entyvio and remission — I eat anything I want. I do note that sometimes too much sugar will affect me but it’s not every time. I haven’t eaten beans for years because of diverticulitis— also popcorn and raspberries. I find broccoli gives me gas which is still sometimes painful so I avoid that. Also can’t forget the pain from eating it when I was flaring years ago.

Interesting. I remember reading an article that, contrary to popular belief, higher nut and seed consumption was actually associated with better outcomes with diverticulitis.

enjoygolf said...
I am at the same point. In a flare since December and don't want to go down the prednisone road again after 57 years with UC. I am currently maxed out on Lialda (4 tabs) and Rowasa enemas every night over the past 3 years. 2/1/2 years ago did the 60 mg of Pred with taper that took 7 months. Big issue I have now about both Pred and Biologics is my age (73). Tough decision. I would think Uceris would be safer than the 40 mg of Pred and worth a try. Tried that 1 time but did not help. Good luck.

Wow, 40mg of prednisone didn't help you?

Any long term issues from the 60mg prednisone for months on end?

I've had the disease for 9 years. One of my biggest concerns is, if I make it that long, how will it be in old age. 73 is older but not very old, I'm assuming you're still generally functioning fine. But imagining this disease at 80+ seems very very difficult.
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1Wish
Regular Member
Joined : Mar 2018
Posts : 122
Posted 2/16/2021 2:30 AM (GMT -7)
Hi @PoopyDoop

This is the first time I've read what you posting about Steroid enemas thin the wall of the colon and should not be used long term..

I haven't found any info about this online, did your GI tell you this?

Also how long is considered long term? I've been on them daily for 30 days now and you got me a little worried now because its not even helping... (still bleeding)
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1574
Posted 2/16/2021 7:26 AM (GMT -7)
A couple years ago when I was in a bad flare, mesalamine enemas stopped doing anything and only the hydrocortisone enemas helped even a little. I was on them daily for probably 6-9 months until remicade kicked in. Doc never mentioned any concerns about them and gives me mail in 90 day prescriptions for them so I can use them as needed. In December I had diarrhea that wouldn't go away. Doc did pathogen testing and all was ok so I assume it was a mini flare (normal frequency, but all D). I started the enemas again in January and am now tapering off as the diarrhea is gone now.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1574
Posted 2/16/2021 7:33 AM (GMT -7)
David -- if you can get the ok to use Entyvio that's the biologic I would recommend. It's specifically targeted to the colon so it's not systemic like the other biologics. It takes a while to work, but when it does it's great. I was in complete remission on it and lived a totally normal life. Sadly it stopped working for me and now I am on Remicade. Remi has given me my life back, but not the perfect remission I had on Entyvio. Doc says it may be IBS now. I can live like this -- 2-3 BMs a day, formed but in pieces, no blood or urgency -- but on Entyvio things were better.
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1Wish
Regular Member
Joined : Mar 2018
Posts : 122
Posted 2/16/2021 7:36 AM (GMT -7)
Interesting, I didn't know you have to also taper off the foam steroid enemas too. I know with the Prednisone you have to but wasn't aware it applies to topical.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1574
Posted 2/16/2021 7:40 AM (GMT -7)
Doc never said I had to taper ... I just do that on my own lol
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1Wish
Regular Member
Joined : Mar 2018
Posts : 122
Posted 2/16/2021 7:43 AM (GMT -7)
Gotcha! Lets see what mine suggests tomorrow. Good to know that the thinning point wasnt brought up. I will also enquire about that.
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David1991
Regular Member
Joined : Apr 2012
Posts : 263
Posted 2/22/2021 6:10 PM (GMT -7)

CCinPA said...
A couple years ago when I was in a bad flare, mesalamine enemas stopped doing anything and only the hydrocortisone enemas helped even a little. I was on them daily for probably 6-9 months until remicade kicked in. Doc never mentioned any concerns about them and gives me mail in 90 day prescriptions for them so I can use them as needed. In December I had diarrhea that wouldn't go away. Doc did pathogen testing and all was ok so I assume it was a mini flare (normal frequency, but all D). I started the enemas again in January and am now tapering off as the diarrhea is gone now.

This is good to know. Also for those reading along, after 1 month of budesonide / Uceris foam enema I got blood work and my cortisol was normal. This tells me that it did not go very systemic. By comparison, when I took ORAL budesonide / uceris my cortisol was tanked, which is what one would expect from systemic corticosteroids.

CCinPA said...
David -- if you can get the ok to use Entyvio that's the biologic I would recommend. It's specifically targeted to the colon so it's not systemic like the other biologics. It takes a while to work, but when it does it's great. I was in complete remission on it and lived a totally normal life. Sadly it stopped working for me and now I am on Remicade. Remi has given me my life back, but not the perfect remission I had on Entyvio. Doc says it may be IBS now. I can live like this -- 2-3 BMs a day, formed but in pieces, no blood or urgency -- but on Entyvio things were better.

Thanks, Entyvio would definitely be my first choice. I'm not sure my insurance covers it though. We'll see. How long did Entyvio work for you? It's scary how quickly these drugs stop working.
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texasmax
Regular Member
Joined : Oct 2010
Posts : 150
Posted 2/22/2021 7:45 PM (GMT -7)
The only thing I hate more than being on Remicade (it was about 10 years ago for me), was when I was not on it. But I wasn't able to hold the line like you've been able to. To answer your question, though, have you considered trying LDN?
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David1991
Regular Member
Joined : Apr 2012
Posts : 263
Posted 2/23/2021 7:45 AM (GMT -7)

texasmax said...
The only thing I hate more than being on Remicade (it was about 10 years ago for me), was when I was not on it. But I wasn't able to hold the line like you've been able to. To answer your question, though, have you considered trying LDN?

Yes, I tried 4.5mg LDN for 24 weeks. I didn't notice any benefit.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1574
Posted 2/23/2021 10:50 AM (GMT -7)
Entyvio stopped working for me after about 1.5 years. But many people have much longer remissions so don't get bummed by the short length that it worked for me.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 916
Posted 2/23/2021 1:07 PM (GMT -7)
I’ve been in remission on entyvio for 3 years next month. Or is it 4? I think it says in my signature.
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limey
Regular Member
Joined : Sep 2016
Posts : 164
Posted 2/24/2021 1:21 PM (GMT -7)
Entivio worked fine for me for just over a year and then it lost its effect.
Since then I changed over to Xeljanz some 2 years ago and it started working for me after a couple of days.
Its been my wonder drug, no rushing to the bathroom, couple of BMs per day and its almost like I don't think about UC anymore.
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David1991
Regular Member
Joined : Apr 2012
Posts : 263
Posted 2/25/2021 9:48 AM (GMT -7)

limey said...
Entivio worked fine for me for just over a year and then it lost its effect.
Since then I changed over to Xeljanz some 2 years ago and it started working for me after a couple of days.
Its been my wonder drug, no rushing to the bathroom, couple of BMs per day and its almost like I don't think about UC anymore.

Interesting, from what I've read Xeljanz isn't typically given for IBD. Why did they go with that over Humira, Remicade, etc?
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18325
Posted 2/25/2021 10:47 AM (GMT -7)
Xeljanz was approved for moderate to severe UC, I don't know the exact date. It's offered when someone has either had no response or stopped responding to TNF blockers such as Remicade & Humira. You can look on their website for more info about UC.
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