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Mild disease - possibly trying biologics

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Ulcerative Colitis
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Posted 12/1/2024 11:24 AM (GMT -5)
I’ve thus far been living with mild-moderate UC. My flares pre-treatment were the worst ones so I’ve been fortunate, all things considered. But I’ve been in a pattern for a few years now where I get symptoms every month. I just stick on my meds and they do resolve quickly. I’d call it a mild simmering kind of thing. Inflammation always seems to be hanging around.

A GI is scoping me next week… they say if I’ve still got inflammation to step up to Entyvio. Has anybody else here been on biologics for mild UC? Feels like a big step and I’m curious what others’ experiences have been. Thanks in advance.
Posted 12/1/2024 3:18 PM (GMT -5)
When you post that you "just stick on the meds every month" do you mean that you keep quitting them when your symptoms stop and then resume taking them when flare symptoms return? If so, that's the wrong way to manage UC! You need to stay on med continuously; otherwise you run the risk of flaring anew and also of developing more serious inflammation. Maybe that's why your MD mentioned a possible change to Entyvio use. If you've been taking oral med or retention enemas/suppositories so far, you should be staying on it/them even during remission from UC symptoms. The major medically-recognized characteristic of UC is that it can flare up again at any time. Also, untreated UP can extend upward to involve the whole colon = pancolitis. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 12/1/2024 4:45 PM (GMT -5)
I am now stopping Entyvio after almost a year. I have been flaring mild to moderately on and off for a couple years. The longest I go without symptoms is about 5-6 weeks. Entyvio is supposed to be the safest biologic to start. Infusions are a pain, but the only side effects I had were tiredness.

So next I'm trying Rinvoq, and hopefully that will get me into remission. I was scared to go to biologics because of potential side effects. However, I am getting worse, and can't let this disease effect my quality of life anymore.

Good luck....Sassy
Posted 12/1/2024 7:05 PM (GMT -5)

Old Hat said...
When you post that you "just stick on the meds every month" do you mean that you keep quitting them when your symptoms stop and then resume taking them when flare symptoms return? If so, that's the wrong way to manage UC! You need to stay on med continuously; otherwise you run the risk of flaring anew and also of developing more serious inflammation. Maybe that's why your MD mentioned a possible change to Entyvio use. If you've been taking oral med or retention enemas/suppositories so far, you should be staying on it/them even during remission from UC symptoms. The major medically-recognized characteristic of UC is that it can flare up again at any time. Also, untreated UP can extend upward to involve the whole colon = pancolitis. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

I’ve been maxed out on mesalamine for a couple of years now. I take them religiously, whether symptoms are present or not. In fact I’ve never been able to taper enemas without more symptoms returning. Only guessing here but I’d say mesalamine keeps the inflammation on the low end of the scale but it hasn’t stamped it out into a state of full remission…
Posted 12/1/2024 10:50 PM (GMT -5)
I was looking at your post history. Was the scope around 2021 your last one? When they've done upper endoscopies and seen the problems in your duodenum, did they biopsy that area? I can't help but wonder of that is the cause of your persistent reflux problems. I had upper GI problems for years and years (nausea, periods of reflux, gnawing pain, burning pain sometimes, etc) that was dismissed as "just reflux" when it turned out I had several ulcers in the duodenum and some gastritis. And that was eventually diagnosed as Crohn's disease of the duodenum and stomach with the help of the biopsy results.

Are you getting another upper scope done with this upcoming colonoscopy? If so, and they see anything amiss in the duodenum, make sure they take biopsies.

Post Edited (beave) : 12/2/2024 12:31:13 AM (GMT-5)

Posted 12/2/2024 3:42 AM (GMT -5)

beave said...
I was looking at your post history. Was the scope around 2021 your last one? When they've done upper endoscopies and seen the problems in your duodenum, did they biopsy that area? I can't help but wonder of that is the cause of your persistent reflux problems. I had upper GI problems for years and years (nausea, periods of reflux, gnawing pain, burning pain sometimes, etc) that was dismissed as "just reflux" when it turned out I had several ulcers in the duodenum and some gastritis. And that was eventually diagnosed as Crohn's disease of the duodenum and stomach with the help of the biopsy results.

Are you getting another upper scope done with this upcoming colonoscopy? If so, and they see anything amiss in the duodenum, make sure they take biopsies.

Yes, 2021 is the most recent scope. They did biopsy throughout. I have had “superficial ulcers” in the duodenum before. No mention of Chrons. I do have a relative that has that diagnosis. I’m not doing an endo this time but I am doing all sorts of blood and stool tests before the colonoscopy.
Posted 12/2/2024 5:03 AM (GMT -5)
Can you find out what your duodenal biopsies showed from the 2021 upper endoscopy that saw the superficial ulcers? Did the doctor give any explanation of why you have those ulcers?
Posted 12/2/2024 2:03 PM (GMT -5)
Good point re upper scope and seeking exactly the pathology results. I do suggest for you to push for another upper scope for further possible diagnosis. At the very least, superficial ulcerations should be dealt with.

q
Posted 12/9/2024 1:07 PM (GMT -5)
Thanks y’all. I will talk to the GI about getting an endo with biopsies. They are already far more thorough than my previous docs which is a really good sign. I’m much more optimistic about treatment.
Posted 12/9/2024 1:40 PM (GMT -5)
Keep us updated on your future appointments.

q
Posted 12/13/2024 1:15 AM (GMT -5)
I assume you have had your scope by now and perhaps a plan, but you sound similar to me with your UC. Although I am certain that at this point if I left it alone I would be a mess, I have felt that my disease has been fairly easily controlled so far. I have felt fortunate that I have not had such a hard time of it as others do. Entyvio was the first biologic I tried and it has managed my UC quite well since 2018 with no side effects that I can identify. I started it because I started flaring about a month after the birth of my youngest and we just weren’t able to get it under control with previous meds like prednisone, Uceris, and the Lialda I was already on. My former doctor said it has the best safety profile, and so far so good for me. So my advice is that if that is their recommendation and they think it will help you, go for it. I would recommend it to anyone needing to go that route, but that’s just from my personal experience. Good luck!
Posted 12/29/2024 6:05 PM (GMT -5)
Thanks guys,

I had the scope and the condition is essentially unchanged since my last one in 2021. The inflammation hasn’t extended at all and the severity was mild, but still active of course. My doctor suggested Entyvio and I’m going for it. I’m a bit concerned that it will tire me out. I live a very active lifestyle and some complain about exhaustion after using the drug. My GI says some patients have reported higher energy after settling the inflammation down though. Won’t know til I try it. A bit apprehensive to take such a big step up for mild disease but I’m going with the advice I’m being given!
Posted 12/30/2024 10:41 AM (GMT -5)
Good luck with entyvio! I think ANY active inflammation makes me tired even if it is small. The body does not like to be inflamed and that may be affecting your energy levels. I also get a lot of malabsorption with my UC when it is active so b-12 shots always make me feel a lot better but aren’t covered by insurance so I only get them a few times a year. Since you are plant based, I assume you supplement with b-12 already and include foods high in iron. I was never able to absorb plants well so always consider that with active disease, too. My gi and dietician pleaded with me to eat meat to help my nutrient levels (5 year vegan before that).
Posted 12/30/2024 7:59 PM (GMT -5)
I really haven’t noticed that it’s ever made me more tired. I remember being told by one of my nurses once to take it easy the rest of the day after my infusion so the medicine could get where it needed to go but I think I had errands to run that afternoon so I just nodded and smiled, lol! I don’t know if that’s legit or not, but I don’t think it’s something I’ve ever followed. The point being it’s never slowed me down. It’s never bothered me at all. I did NOT want to go to stronger drugs, but at the time I had an infant and was shlepping 3 of my older children around for school and other things and I did not have the ability to be chained to my bathroom, nor did I want that either. And after watching my mom resist it for years with her ulcerative proctitis, the way she suffered only to have it move up into her colon (which raises her cancer risk while the proctitis did not) and make it harder to control even with biologics, I know I made the right decision. I wish I could control it by other means but I think that ship has sailed. I can only speak from my personal experience of course, but I hope it works well for you!

I will say that doing as well as I am, the prospect of facing changes after my scope in a couple of weeks does bum me out. I fully anticipate active disease to be seen but I am not having a full blown flare at this time, so changing my therapy to face the possibility of ugly side effects or a drug that ends up not working as well is an unfortunate situation. So I understand where you’re coming from. We just have to make the choices we think are best at the time and pray for the best.
Posted 12/31/2024 3:34 PM (GMT -5)
Bacongirl,

I could see how active UC could affect nutrient absorption. I do blood work every year and everything is good. I do have a history of low vitamin D which I supplement. B12 has always been in the normal range, same with iron, even when I didn’t take a multi. Been vegan 20 years. I’m about 90% WFPB nowadays. Usually most everything I eat digests well. I avoid deep-fried things or heavy sugar…

Nattyjk,

I look forward to comparing notes on Entyvio’s efficacy. I’m curious - did your doc recommend staying on Lialda as well? My hope is to wean off of Rowasa enemas and save them for flares but I don’t know about the tablets.
Posted 12/31/2024 6:01 PM (GMT -5)
Most people are low on vitamin D and I am making sure to at least take it during winter. D3 is the best form especially for us IBDers. Absorption issues are common in IBD so methylated versions of vitamins are probably better. Whatever vitamins/supplements you take it’s a good idea to search out the most absorbable versions and/or take them in the combinations that aid absorption. The B vitamins are better absorbed when you take a complex.

Yes, my former doctor wanted me to stay on the Lialda. However, because I was so much improved on the Entyvio, I often forgot to take it and then I questioned whether it was necessary to take additional meds if I was well controlled on Entyvio alone. Personally I want to only be on what is necessary. But when I asked, according to her it was for cancer prevention and she wanted me on at least 1 pill per day. Since I’ve been a little off the last few weeks I’ve been faithful about taking all 4 after dinner. I haven’t done rectal meds in years and it was not recommended I continue to do so, but I would to ward off a flare or avoid messing with my meds if it could do that for me. I was considering messaging my new doc’s office to request some to use until my scope but I upped my curcumin, too, and things have been better again. I’d rather take pills than do enemas, lol! It will be interesting to see what the scope shows and what she wants to do going forward. A little scary, too.
Posted 1/1/2025 12:45 AM (GMT -5)
If a person gets into a pretty good remission on a biologic, then the benefits of continuing on mesalamines are debatable.

Downsides include the cost and the hassle of so many pills.

Benefits include the possibility that they're helping some, and that they lower future cancer risk. But the cancer-preventing action of mesalamines isn't that strong, and it's certainly not strong at all if you're only taking one pill a day or taking them inconsistently. Several studies have been done on the cancer-preventing ability of mesalamines. Some of those studies show a small benefit. Some showed a really small benefit. Others showed no benefit, and one or two might have even shown a small *increase* in cancer. Putting all the data together in a meta-analysis shows a likely small overall benefit in cancer prevention.

The thinking is that anything that reduces the inflammation reduces long term cancer risks. That means that the biologics, when they work for a patient, probably also reduce risk of future cancer.. And they may even reduce the risk far more than mesalamines do.

So continuing mesalamines for cancer risk reduction really isn't all that necessary if you're responding to a biologic.

Whether or not to continue mesalamines if you're responding to a biologic is an individual, case-by-case decision. Many stop them with no problems. Some continue them because they don't mind the cost or hassle and they find they get a small benefit of taking them on top of the biologic.
Posted 1/1/2025 9:35 AM (GMT -5)
Beave, thank you for that information. What is your opinion on the use of rectal meds with biologics?
Posted 1/1/2025 1:01 PM (GMT -5)
I’ve been in remission on entyvio for 7 years now. No side effects. I do sometimes get super tired the day of my infusion but if it happens (like yesterday) I just rest up and keep activities low. But the tiredness doesn’t linger nor does it happen every time. I also wonder sometimes if it isn’t just a response to the “trauma” of the infusion process itself and not the medication. Even though infusions on entyvio is very short (30 minutes) there’s still the stick and the check in time and sitting in one spot. Not that I mind but it is a hassle. I still thank god I have such a short infusion.

I was on Apriso when I started entyvio but stopped it about a year after I was in remission. But I had never gotten to anything close to remission on mesalamine so it was an easy decision for me as I never felt it had helped me at all. If mesalamine has helped you then I would continue if I were you. At least until you’re in a full endoscopic and symptomatic remission.

Good luck! 👍🏼
Posted 1/1/2025 1:33 PM (GMT -5)
Nattyjk...I'll give you my perspective on mesalamines, which I've been on coming up 36 years. Over the past 5 C-scopes, pathology reports have been normal. Architectural changes in the past have rearranged themselves, solely because of me being on my meds. I still do flare, but I treat at earliest symptoms (increase rectals). Any polyps have been hyperplasia, but I haven't had any over the past 3 scopes. Oral mesalamines don't treat the rectum.
My suggestion is try the rectals if you can use the mesalamine. But since you state you prefer to not use them, you will lean toward a statement that they don't help. It is a commitment that a lot prefer to not do. But if they get you into a good state, it's totally worth it.

q
Posted 1/1/2025 2:37 PM (GMT -5)
I would stay on enemas indefinitely if they kept me in full remission. I’ve been using them nightly for a few years now. It becomes so easy to do once you get some practice doing them. I would recommend their use to anyone who can tolerate them and derive benefit (patience is key I think - don’t expect instant results).

Also it’s nice to hear from people who have achieved long-term remission on Entyvio without noticeable side effects. Never know what to expect with prognosis but at least there’s a chance this therapy will work better than what I’ve been on.
Posted 1/1/2025 6:30 PM (GMT -5)

Nattyjk said...
Beave, thank you for that information. What is your opinion on the use of rectal meds with biologics?

If you're still having rectal inflammation on a biologic, it's perfectly fine to use rectal meds if they help.

If they rectal inflammation is severe, it might indicate that you need to try a different biologic.
Posted 1/1/2025 7:33 PM (GMT -5)
Another Entyvio remission here! I’m more than two and a half years in. I had proctitis for 11 years and managed flares with patience and pushing through (I’m not sure this was wise). After an appendectomy preceded by 24 hours of heavy iv antibiotics and antifungals, my UC definitely worsened, and I had a paradoxical response to salofalk, so I can’t comment on staying in mesalamine.

A course of budesonide then Entyvio got me into remission. I was very very reluctant and disappointed to have had mild proctitis for more than a decade and then need to jump to a biologic, but it has been a great choice for me. I do get very tired and heavy feeling on the day of my infusion, but it helps to be very well hydrated (with electrolytes too) and to take the rest of the day off. I like to schedule infusions for later in the day, so it’s not a totally lost day. I wake up the next morning usually feeling pretty normal.

Good luck! Keep us posted!
Posted 1/1/2025 10:13 PM (GMT -5)

quincy said...
Nattyjk...I'll give you my perspective on mesalamines, which I've been on coming up 36 years. Over the past 5 C-scopes, pathology reports have been normal. Architectural changes in the past have rearranged themselves, solely because of me being on my meds. I still do flare, but I treat at earliest symptoms (increase rectals). Any polyps have been hyperplasia, but I haven't had any over the past 3 scopes. Oral mesalamines don't treat the rectum.
My suggestion is try the rectals if you can use the mesalamine. But since you state you prefer to not use them, you will lean toward a statement that they don't help. It is a commitment that a lot prefer to not do. But if they get you into a good state, it's totally worth it.

q

Well, I prefer not to use them because they aren’t exactly fun, but I am certainly willing to use them if it means avoiding riskier things. They did help me when I used them before, but it’s been years since I moved to Entyvio and haven’t felt the need for them. This isn’t to say I’ve been symptom-free this whole time, but symptoms are usually transient and not life limiting. However, my last scope in July 2023 showed some active disease and recent FCP was elevated indicating inflammation. That means it’s likely something will be seen on scope and the doc will want to do something. How serious that something needs to be remains to be seen.
Posted 1/1/2025 10:23 PM (GMT -5)
Beave, I can’t be sure where the inflammation might be. At a certain point I know enemas won’t be helpful because they can only reach so far. I know I have to wait for the scope to know that. Just hoping for the easiest and safest treatment. Gee, aren’t we all? ;)
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