Humira for proctitis only

I’m new to this forum, but have been reading for a while. I was diagnosed with ulcerative proctitis in 2016 via colonoscopy after food poisoning. Mesalamine suppositories did nothing to put in remission, but uceris foam did wonders and I was able to be managed for two years intermmitently with Canasa suppository and the uceris. Once in remission, I was able to stay completely symptom free for a year...then I caught the flu. I’m currently in month 4 of a flare which somewhat comes and goes but never fully resolves. The uceris foam is doing next to nothing this time, GI doc did a medrol dose pack which also did nothing. He now wants me on humira. I am concerned about a few things with this. 1. Risk vs benefit of such a “big gun” med for just proctitis. I don’t have pancolitis, I’m having 2-3 bm per day sometimes mucous/blood sometimes ok. Quite frankly, I’m terrified of humira and the biologics. There isn’t much long term research on the effects, and I warn you not to simply google it because it’s wnough to scare the life out of you (cancer,depression,neuropathy). Also, I work in healthcare and I’m afraid of the infection risk. 2. I am super active, healthy otherwise, I love to work out and run and travel and I’m just terrified. I feel like I am giving in to a life of chronic illness with humira. Is there anything else medication wise that has worked for you that I should ask for before taking this medicine? My GI doctor seems he’ll bent on this medicine, and hasn’t really explained anything to me. I’ve been waiting for him to call back so I can discuss my concerns but it’s been almost two weeks and I haven’t heard back. Any information or opinion is greatly appreciated. I feel so alone in this journey and completely helpless.

Welcome to the forum, but sorry to hear you're struggling with a stubborn flare!

Regarding where you are now, not sure I would take humira for 2-3 bms a day. I would ask about the stronger mesalamine enemas, which are 4-grams of medicine versus the 1-gram in a typical canasa suppository. I would ask about also adding in a 4.8-grams of daily, oral mesalamine (lialda/mezavant/pentasa/asacol). If adding both of those do not work, then adding humira/azathioprine might not be a bad idea. Having Procititis doesn't mean you have an easy-go of UC, as rectal infalmmation is often the most stubborn and hard to get rid of variety. Heard of some on proctitis needing humira and others with proctitits even needing a colorectal surgery due to non-response to all meds.

I'm on remicade (7 or more years now), a sister medication to humira, have had no side effects and achieved my first remission. It's been great! Yes there are very small but serious side effects (effecting less than 1% of patients), so the benefit far out weighs the risk. Even the mesalamine you are taking (canasa) has small but serious risks of causing liver failure, blood abnormalies, heart-inflammation, and kidney damage if you care to read the package insert. Yet it is these biologics that scare people spitless.... Not sure you are at the point of needing biologics but I am always eager to dispel fears, a link from the CCFA that takes a deep dive into risks versus benefits:

https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/risk-and-benefits-transcript.pdf

Thank y’all for your responses. I have been driving myself crazy thinking I’m being a terrible patient for not wanting to do the humira but my gut (no pun intended) instinct says to hold off. Maybe that’s denial.

The extent of my colitis is rectum only. Strictly proctitis, no involvement in sigmoid or higher per colonoscopy. I have blood and mucus with most BMs. Not a lot. Just enough to annoy. I go some days with no issues, some days are not so great. To add to the fun, my insurances company generally denies all of these meds at first and doesn’t approve some ever (uceris I had to pay out of pocket) so that’s an added stress On top.

Again. Thanks for the suggestions. I am hoping to speak to this doc soon

I agree with trying mesalamine enemas first. It's your body and your GI doctor sounds like he sucks. I dont stay with doctors like him who dont let me play a major role in my treatment plan. And taking 2 weeks to call you back is unacceptable.

Hi! I haven’t posted in quite a while, but I’m in a similar situation to yours. Was originally dx’d with mild to moderate left sided UC. Was in remission for about 2 years on just Lialda (mesalamine). Started having more flare ups which indicated that the meds weren’t really cutting it anymore. Started adding all the others like enemas, suppositories, Uceris, which helped a bit for a while, until I started having the proctitis symptoms. This proctitis flare up has lasted me a year and a half. It will NOT go away!! I resisted going to the next tier drugs, tried everything else....diet, acupuncture, supplements, etc. After exhausting pretty much every tier of drug that isn’t an immunomodulator or a biologic (mesalamine-Lialda, Canasa supps), Uceris, prednisone, steroid enemas (which never worked for me but made symptoms worse), I am currently on 75mg of 6MP (immunomodulator) and Uceris daily, which is STILL not making it go away. I convinced myself for a long time, that because my symptoms are “moderately tolerable” and I don’t have any bloody diarrhea, that I am not as sick as someone who takes 6MP for cancer. However, what has really come to be my main concern is the fact that I have had inflammation in my rectum for a year and a half.
So....here I am now, waiting for my Humira rx to be approved by my insurance. I never thought it would come to this. I have had so many concerns about the side effects of the drugs (mostly 6MP and Biologics), but I moreso don’t want to go through a cancer diagnosis and treatment, which is likely what I will be facing if I do nothing to get rid of this inflammation. I have two young girls, am a stay at home mom, and I just want to live my life again. I have not been “living”....when I don’t go places or travel because of concerns of whether I’ll have a bathroom close by, am constantly feeling depressed and lonely in this disease hell, and am always trying to find new ways to “fix” myself, I am not living.
I’m hopeful that the Humira will put me into remission, and have really had to change my way of thinking about meds; instead of being so resistant to them, I am grateful that there is something I can at least try to get me back into remission.
Also, just to share, my sister-in-law took Humira for 10 years for her Crohns, and never had any side effects. It kept her in remission for a decade and the only reason she is not still on it, is because she had a baby and didn’t want to take it during pregnancy. She has stayed in remission since, and hasn’t gone back on it yet.
Sorry for the novel! I really hope you find what works best for you, be it Humira or something else. I completely understand your reservations and you are not alone in your dealing with the misery of UC/proctitis symptoms. Take care!

Just an update ! Saw a new GI doc....Like him much better. Understood my concerns. We went to oral and rectal mesalamine. No improvement. Had a flex sig and while it was still “just proctitis”, it was pretty significant. I was having 7-10 BMs per day, cramping, bloody. So we made the joint executive decision to get on humira at this point. I feel better having tried everything. I’m currently on prednisone which I have a love hate relationship with. Side effects are miserable but I have most of my symptoms gone. Start humira tonight. Although I’m not thrilled and am scared, I have hope that I’ll get my life back soon. Thank you all for your advice.