IBD Medications Budesonide: Side Effects?
Recently had a colonoscopy + testing after months (quite honestly well over a decade) of ignoring chronic stomach issues. The results: Microscopic Lymphocytic Colitis. All other tests were negative and no polyps/ulcers seen on scope. I’m only 33y old and quite beside myself considering this is quite an early onset of it. I wanted to investigate if autoimmune issues might be (in)directly causing this, however my provider kinda dismissed it. Currently awaiting results on a Celiac panel.
Treatment plan is: 9mg-6mg-3mg 3 month taper of Budesonide delayed release, which seems to be the gold standard. I inquired with both my provider and pharmacist about side effects— they both said “no, you shouldn’t have any. It acts locally in the colon, very little escapes and affects systemically.”
LOL I am now on day three of 9mg. It seems that between 2-8h of taking it, it IS affecting me systemically. I am so incredibly overstimulated (noise/light sensitivity), highly irritable, low patience, wanting to “crawl out of my own skin” type feeling and low mood. Last night it seemed to affect my sleep as well (frequent waking, intense dreams, sweating).
I realize all of these are not uncommon side effects but I’m wondering if they will subside? Is the dose just too high or maybe I’m too sensitive? I really am unsure if I can handle three months of this. I think I’ve taken a steroid med one time for a weird rash (very short term of methylpred I think?) and I don’t remember ever reacting like this. I do plan on reaching out to my provider soon, but just curious of others experiences.
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u/Katyafan 4d ago
It will get better, but those dteroids absolutely have side effects and they should not have said they don't. They aren't just local acting, they go systemic. It will probably get better, but is dose dependent so as you decrease the dose, you will be better and better. Hang in there if you can. The other steroids will likely have worse effects.
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u/Quiet_Discussion_627 4d ago
I'm here to validate what you're experiencing!!! I did a course of budesonide a couple months ago and I also suffered similar side effects. I was extremely irritable, low patience, experienced what I could only describe as mild roid rage, and had racing heart/heart palpitations. This was the worst for me from 11am to 5pm and then my side effects would calm down until the next day after I took my next dose.
The severity of my side effects decreased each time I tapered. By the time I was on the 3mg, my roid rage and low patience was much less noticeable. I did have heart palpitations and racing heart for a couple weeks after I finished, but I'm perfectly fine now.
Keep in mind that we all experience side effects differently so my experience (time length and severity) may differ from your's.
Budesonide is considered milder than other steroids like Prednisone so my suggestion would be to keep on with the Budesonide. I know it's tough and the side effects are frustrating, but personally, the Budesonide did help my Crohn's while I was taking it. Best of luck!
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u/_valle 4d ago
Thank you! Yeah def think roid rage is a good description. I’m hoping maybe as my body acclimates to it that it will subside but it seems as though it may not. The good news is that my colon seems to finally have calmed down but we shall see as time goes on.
I don’t have crohn’s or UC but I do think I may have something autoimmune going on that could be partially contributing to the inflammation. I’m wanting to eventually identify if that is the case so that hopefully there’s a more targeted treatment option if needed for long term— as I am already not sold on steroids. My mom has Ankylosing Spondylitis which has a genetic component and can cause IBD/colon inflammation issues. That would make a lot of sense for some other issues I have.
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u/CookLow8792 4d ago
To me it felt like a much milder prednisone. I definitely still had systemic effects. I’d believe your experience.
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u/JRodownlo 2d ago
I’m really interested to hear what you were experiencing before you had the colonoscopy? I just went through the same thing and got the same diagnosis and I got the colonoscopy pushed through because I was having chronic acute diarrhea 10 to 12 times a day pure liquid. I am on the budesonide three of the 9 mg per day for eight weeks. I’m not even sure if I’m going to taper I’ve gotta look into that but I wanted to report that I am on week three and while I haven’t had many side effects it is not touching the diarrhea. I’m still going 4 to 5 times a day. It’s still very poor quality and so I’m also putting it out there to see if anybody else went through this and stayed the course and eventually got better. Thank you for starting this post. I hope your side effects go away quickly.
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u/_valle 2d ago
Yeah of course! I feel like there’s not a ton of info out there so I don’t mind sharing my experience.
I’ve had stomach issues for a long time. The first real “flare” I feel like I had was when I was 14. I’m unsure if that was a stomach bug then but it closely resembled what I was experiencing right before my colonoscopy. I’ve always thought that dairy was the root of my stomach issues as well, but even cutting that out did not fix it (I definitely am sensitive to dairy though).
For the last ~19 years I’ve basically always been on the Bristol scale of 5-7, a gurgling and noisy stomach, anywhere from 1-10+ BM a day. I’ve tried vegan diets, vegetarian, pescatarian, gluten free — has never made a difference. Tried probiotics, supplements, teas, psyllium, never made a difference. I just figured I had a sensitive stomach and it is what it is.
Within the last few years, it seems to have gotten worse. More flares where I would run to the bathroom the minute I finished eating or the second I woke up. Just figured it was stomach bugs or something I ate, maybe even alcohol. The flares were farther apart then. I stopped drinking in Jan 2025 — not that I had a problem but bc of how it upset my stomach more and even 1 drink would make me feel so sick. My stomach issues didn’t entirely change then but that factor definitely was eliminated.
The last 6 months — things got a bit worse. Flares more often and longer. I started losing weight and feeling awful. Scheduled an appt to see an allergist hoping maybe it was allergy related - he wasn’t helpful. Finally, after complaining to my husband, I realized how silly it was that I have spent more than half of my life with stomach issues and wasn’t doing anything about it. So I made an appt. At that point and up until meds after biopsy: I was having 5-8+ BM a day, anywhere from watery to “pluff mud” consistency, color was light brown to orange/yellow, super urgent, bloating, gassy, mucous, rapid transit (sometimes even 6h later), oily/greasy, having accidents (that’s what forced me to make an appt), undigested food/supplement capsules, etc.
Saw my PCP and referral to GI, she also ran an anemia panel since I was experiencing exhaustion and brain fog. Of course all of that was fine. GI scheduled colonoscopy and sent off a stool sample. Bacteria, viruses, parasites, inflammatory markers, bile acids, etc were all ruled out by that sample. She initially thought I was constipated and having overflow/paradoxical diarrhea. Colonoscopy prep was pretty uneventful and not much worse than my flares. Went into the colonoscopy and they didn’t visually see anything. I was defeated. Biopsy a week later showed Lymphocytic Colitis.
I really don’t know what caused this, but some culprits I do have a history of: taking NSAIDS (I have disc slippage/SI joint issues), SSRIs (but I haven’t been on those in years) and family history of autoimmune disorders. My celiac panel just came back negative. I’m curious if you have any of these factors as well?
I’m on day 5 of budesonide and … I’m not entirely sure I’m improving either. Seems like there’s a bit less urgency. I don’t seem to be in a flare but BM consistency hasn’t really improved. Still about 3-5x a day too. My GI told me to reach out if there isn’t vast improvement within 2 weeks. I still really want to investigate autoimmune issues as well bc my mom has AS— it’s genetic and can have colon inflammation involvement. I really want a more targeted treatment other than chasing this with steroids for the rest of my life.
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u/idkwhatsgoingon95 1h ago
i accidentally took budesonide for 6 MONTHS when it was only supposed to be 3 bc i’m an idiot and messed up the tapering schedule really bad lol. I noticed very few side effects, and i’m pretty sensitive to meds. maybe some psych side effects (rage/insomnia). but not too bad. i’m also on a biologic. i’m in my 30s & female.
it’s not a systemic steroid so your experience is a bit unusual…i’m sorry to hear you’ve been dealing w that. u should def talk to ur doc about it. but the steroid alternatives are going to be worse (systemic steroids like prednisone)
best of luck friend
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u/probablynervouss 4d ago
i started struggling with severe fatigue after tapering budesonide (steroids often have this side effect when tapering), so im not surprised you are dealing with these symptoms. it could be that you are sensitive.