About to Give In to Biologics

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.

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.

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?

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
A quick google for "topical steroids long term" gives you an idea.

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.

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.

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.

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.

Gotcha! Lets see what mine suggests tomorrow. Good to know that the thinning point wasnt brought up. I will also enquire about that.

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?

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.

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.

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.