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Very bad side effects with Entocort Enema

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Posted 5/2/2024 1:19 PM (GMT 0)
Hello everyone,

I have had UC since 1998. Until I had my children, the flare-ups were fairly easy to deal with. Since I've had my two children, who are 5 and 7, it's been much more difficult.

I currently have inflammation very low down in the intestine, near the anus, and I can't get rid of it. I take Mezavant, and for the past year I've been taking Salofalk suppositories almost every day (a lot of time twice a day) and Salofalk enema at certain times. For the last 3 weeks I've been taking Entocort enema, but yesterday morning I decided to stop because I had no more energy and I was starting to feel depressed and sad, which is really not me. The side effects are really intense.

I feel stuck with enemas and suppositories for the rest of my life, and it doesn't even work. So, for the last 2 days I've been taking a break, but I'm taking the Mezavant. I already have some blood and mucus!!! Nothing works, I'm so sad.

I was wondering if any of you had inflammation in this area and what worked. The rest of my colon is fine.

Thank you so much for all your help.

Joan.

Ps : I used to come here several years ago and had lost the site, I'm so happy to read all the posts, I feel less alone.
Posted 5/2/2024 9:15 PM (GMT 0)
What about a steroid suppository? Perhaps that mixed with the Salofalk enema would do the trick. Those days when my boys were younger and I was flaring were so hard. I ended up having to add Imuran to my meds and it has worked well for me.
Posted 5/2/2024 9:28 PM (GMT 0)
Sorry to hear you are struggling. Never a good time when flaring sad

What dose of Mezavant are you on? You may need to move to a different class of meds. They sound scary, but really do give you your life back when you find the one that works. There are a lot of options these days. What does your doc say?

Unless you are feeling better not using the entocort, the fatigue may just because of the flare. My last flare was pretty bad and I had zero energy and was so depressed (mostly I was depressed that I was exhausted just walking from my car to my office -- not a long distance at all). Turned out I was so anemic I needed blood and iron transfusions.

Still ... entocort is just a band aid -- it can help with symptoms but doesn't really heal anything.

Message your doc if you have a portal ... or call if not and see what he/she suggests. Don't let them push you off too long. You have 2 young kids and can't wait until you are super sick to get a new med.

In the meantime, some people here get some relief with diet changes or different supplements. Never really worked for me so I can't suggest anything. Well ... homemade nopal water did help me for about a year and then it didn't. If interested I had a great big long thread about it ... just search the site. I don't think it worked for most people though.

Hang in there and keep us posted.
Posted 5/3/2024 1:01 AM (GMT 0)
Thanks for your help.

I never tried Imuran, it's scaring me...I never took a stronger meds.
I take Mezavant 1.2mg twice a day - I feel it's not working, in fact, I don't think it's ever worked.
I'm going to write to my doctor... He said he'd prescribe a stronger medication if the Entocort didn't work. I think I've been on a flare for 7 years.

I'll look for nopal water, thanks !
Thanks a lot for you help, I feel a little more confident about stronger meds
Posted 5/3/2024 2:26 PM (GMT 0)
Are you located in UK? They can get the mesalamine foam for low-down UC inflammation, but it never gets distributed in USA nor Canada! It doesn't sound like you have urgency, which would indicate an inflamed rectum, but if you do suffer from that, the steroid foam would likely help more than suppositories. (I personally hate supps 'cause they tend to leak out.) Steroid foam is 10% active ingredient so it's less likely to bring on side effects than liquid steroid retention enemas. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 5/3/2024 6:22 PM (GMT 0)
Hello again everyone,
Thanks for your answers.
I'm in Montreal in Canada. My doctor had prescribed Entocort foam, but there wasn't any at the pharmacy and the pharmacist told me it was rare here, but indeed of the enemas, I would have liked to try the foam for sure.

I wrote to the nurse yesterday and asked to try another treatment soon. I’m still waiting for an answer.

about 4 months ago, I had a colonoscopy, but my doctor was 5 hours late, so I think he did my exam really quickly, he told me you're in remission, everything's fine, continue your Salofalk suppositories, I left full of hope, but I knew deep down that it wasn't okay.
As you say, the suppositories are not easy and make a kind of liquid that's very difficult to manage, especially in the morning, I have to run to the toilette like crazy (every single morning).
So I told him a month later that it wasn't going well, we had another colonoscopy, he took his time, did several biopsies in the affected area, and prescribed Entocort enemas. I'm really sad because I've been taking this treatment every night, still full of hope, but it's not working, and I've even had more blood since I stopped.
I'm taking note of the recommendations here and I'm going to talk to my doctor about it, it's starting to scare me, it's been going on for a long time, it's stressful and exhausting.
A salofalk foam or something like that would seem to work better.

I realize here that I don't know much about treatments. Since 1998 I have taken Asacol, Pentasa, Salofalk suppository and enemas, and now Entocort.
Posted 5/4/2024 3:36 AM (GMT 0)
It’s really scary moving up to another med. I think part of my fear was based on denial — I didn’t want to have to face the fact that this disease wasn’t going to go away on its own and I really did have a life long disease. The depression and fatigue are real and go hand in hand with UC. I remember not having the energy to do hardly anything and then combined with weakness from not eating — and I can’t imagine doing it with young kids!!!

In my case, entyvio infusions worked and I’ve been in remission for 7 years now. With no symptoms or side effects. The benefits in my case greatly outweigh the risks and I’m really glad I did it.

If possible can you get a different GI? Doesn’t seem like yours is communicating well.
Posted 5/5/2024 12:05 AM (GMT 0)
Besides not communicating well, as FlowersGal commented, your doctor was 5 hours late to a c-scope then had you do another one month afterward? That sounds irresponsible! No wonder you've been feeling depressed. Deep down you probably realize that he doesn't prioritize your case. Changing doctors is always a somewhat scary process, but you should be able to locate a more attentive gastroenterologist than this guy in or around Montreal. Maybe check available GI specialists affiliated with McGill Med School. [?] / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 5/5/2024 4:19 PM (GMT 0)
I'm really sorry to hear about these troubles, Joan. My worst flaring definitely started after my two children were born, as well. For a long time, my inflammation was only ulcerative proctitis, but it did eventually spread, and I had to start on Entyvio two years ago. Honestly, I don't think I've had side effects, and it's kept me in remission so far. (I couldn't tolerate Salofalk suppositories, unfortunately: I seem to be one of the people allergic.)

If it's time to shift your therapy, I encourage you to work through your feelings and do what you need to do to be well. It took me a lot of processing to get there.

I also wanted to say, as a person in another Canadian province, that we don't always get to shop around for our GI specialists or get other opinions, usually due to significant scarcity and efficiency measures. If you can in Montreal, that's excellent! Definitely advocate for your own best care! But sometimes folks in other parts of the world don't understand how an underfunded public system works, and at least in the prairie provinces, there's no switching specialists, and we have to put up with their overworked flaws (like coming late and being in a rush). It's horrible, and I hope you can switch / find a better doctor. But if you aren't able to, I just wanted you to know you're not alone in being stuck with fewer choices than some of the folks on this board in other nations' health systems.

Wishing you well!
Posted 5/5/2024 5:19 PM (GMT 0)
For Joan & Gritty Hope, FYI-- we in USA have plenty of trouble connecting with IBD-competent doctors, too. There is a scarcity of sub-specialists, many won't take insurance at all, and there can be a 6 month or longer wait to finally get an office visit. Then if they do take our insurance, some of those plans try their hardest to get out of paying for our Rx medication(s), a real nightmare of uncaring bureaucracy! So believe that when we advise to pursue a change of doctors, we don't take that process lightly. It took me 10 years to connect with a then-young gastroenterologist who had completed residency with a top sub-specialist gastro teaching/researching in the urban med school where Dr. Burrell Crohn had 1st identified Crohn's disease. At that time (1990) the top guy could command $900 U.S. for an initial office visit. My then-young gastro could get $250-$300, but did not accept insurance, either. I scrimped on life's "extras" like cable TV, cars, and pet ownership in order to pay the young doctor's fees, but finally got my saving UC med through a national drug trial this sub-specialist participated in! Then this doctor opted to accept Medicare insurance around the time I retired, stating that: "My career has given me everything I ever wanted-- so now I intend to give back." *** Therefore, I only advise here on the forum knowing from experience that most anything related to reliable and successful IBD treatment can be unbelievably difficult/complicated. A couple years ago we had a young married guy from rural Missouri posting that there was only 1 working gastroenterologist within 200 miles of his location!!!! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 5/5/2024 5:41 PM (GMT 0)
OH, you said that very well. It is hard EVERYWHERE to find a GI who really knows IBD and wait times everywhere have worsened. I almost died from incompetent care so many times so thinking of changing GI doctors during our current health care crisis is just not possible here. I had a scope at 11 am once and arrived at the hospital at 9 am. My GI had an emergency and didn’t get to my scope at 7:30 pm. This was probably 10 years ago but we are always at the mercy of their schedule. Just the way it works unfortunately.
Posted 5/7/2024 1:35 AM (GMT 0)
It's so sad that it's so hard to get a good GI. I was sure it was much easier in the US. I've changed a few times since my diagnosis in 1998, I've been to private clinics twice because the wait was too long. I'm going to give my doctor a chance, he's young, my previous GI referred me to him because he retired. I hope to hear from the nursing group soon, I thought I would today, I'm disappointed... I wrote to them on Thursday. It takes a lot of patience!!! Thank you so much for all the sharing here! I'll keep you posted about my next treatment. In the meantime I'm rigorously taking my Mezavant and the (very annoying) Salofalk suppositories so it doesn't get too much worse.
I hope I don't sound too weird, my first language is French smile
Posted 5/7/2024 1:45 AM (GMT 0)
I would call them again tomorrow, don't let them fob you off. Yes, it's hard to find a good dr, I went through 5 before finding one that truly cared about helping me. We have to advocate for our own care.
Posted 5/11/2024 9:39 PM (GMT 0)
Hello everyone, I wanted to give you a little update on my situation. I finally spoke with a nurse from the gastro team, I realized that my doctor is a bit « special » ! He told me that it was impossible that the Entocort enema could make me tired, he recommended the foam to me, as with my first prescription, he called the pharmacy himself to be told that Entocort foam is discontinued. It was difficult to get, but this evening I'm starting the Mezera foam, what do you think? I hope it’s going to work !
Good evening !
Posted 5/12/2024 3:23 PM (GMT 0)
Is Mezera foam one that contains mesalamine/mesalazine (5-ASA)? If so, that's a big break-through in Canada because the 5-ASA foam hasn't been available to us in N. America though UK, Europe, & Australia got it over a decade ago. I recall a forum member in Scotland, Anti-flare was his moniker here, who was able to get the 5-ASA foam for his then 14-year-old son with UC. The son suffered from a relatively small bleeding spot low down that resisted healing and baffled his doctors, but using the 5-ASA foam did heal it after a comparatively short time. So, if that's what you just got by Rx, definitely try it. The advantage to foam over suppositories is huge, IMO, because it doesn't ooze/leak out. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 5/12/2024 10:29 PM (GMT 0)
It’s so weird how some medications are allowed and others aren’t. I think Entocort has never been available in US.
I used to use Uceris foam, which is a budenoside foam like entocort. Is that available in Canada? I always found that to be very soothing to my colon and usually helped a lot in mild flares.

Let us know how you fare with the mezera foam. It sounds interesting.

Side note regarding foams and how far up the colon they reach in comparison to enemas. The GI who prescribed my uceris foam told me the company rep dropped off some samples at his office one day and they decided to experiment
So they shot a canister off in the office and the foam flew all the way across the room! So he felt pretty confident that its “reach” could extend pretty far up the colon.

Hope you feel better soon!
Posted 5/13/2024 2:02 PM (GMT 0)
Well, that GI was rather silly! The colon bends at sigmoid flexure so nothing is going to flow straight up there. If the descending colon has inflammation that requires oral med. / Old Hat (40+ years with left-sided UC; in remission taking Colazal)
Posted 5/15/2024 11:17 PM (GMT 0)
Hello everyone,

Thank you for your encouragement, I am positive about my new treatment. I realize how lucky I am to be able to try it. The foam is very interesting, I started on Saturday evening. For the moment, I think it's improving a little, but I couldn't say for sure. What I can tell you is that as it spreads (intensely) into the rectum, it's a little harder to keep in, but I manage. Indeed, I think it can go further than we think in the colon, the "push" is pretty strong it seems to me. I hope it will be available to everyone who needs it eventually.

A special thanks to Old Hat, I remember you from a few years ago, you helped me a lot.
Posted 5/16/2024 2:10 AM (GMT 0)
You're welcome, Joan-- very glad that my advice helped you. When I 1st joined the forum there was a moderator posting as Kit Kat Baker, who advised female members needing comfortable jeans or slacks to buy them in 2 sizes if/when we finally lucked out on a style that didn't pinch our achy places. That was a big help to me so I try to recommend practical aid like she did. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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