Ulcerative colitis - worried about medications

It’s not specific to his condition and there are others not yet recruiting or enrolling at various clinics throughout the world. It appears China and Japan are having many people afflicted with this chronic issue. The website has many trials waiting to open up fyi!!!

I tried sending you a few medical articles, but the site will not allow me to attach them. Research Crohn's and Colitis Foundation (they even offer free webinars), MedPage Today and Gastroenterology journals. You will find so much information! Infliximab has been around for decades and works quickly. There are 3 loading doses (0,2 6 weeks) and then infusions every 4, 5, 6 or 8 weeks depending on response. They also titrate the dose (after premeds - Tylenol and an antihistamine) so it takes hours each time. Get a GOOD GI doc that does regular therapeutic drug monitoring and KNOW your body. That's the best advice I have and I wish you and your son the very best with treatment and a LONG remission!!!

Thanks Dval! Wishing you a long healthy remission too! You’re an angel 😇

This comment is encouraging.

I was diagnosed with Crohn's disease of the large intestine at age 61 via a colonoscopy.

So far my symptoms have been relatively mild (occasional cramping but no excessive diarrhea, etc.) but my calprotectin level was 403 which apparently is considered to be a moderate level of inflammation.

My GI does not believe that anti-inflammatory drugs such as Mesalamine will be effective and is opposed to prescribing steroids (which I wholeheartedly agree with) and is trying to get my insurance to approve a biologic.

He initially suggested Humera because it is administered via self injection, but when I mentioned that I wanted the safest biologic with the lowest potential for side effects he then suggested Entyvio (I am willing to deal with the inconvenience of infusions).

I am a bit apprehensive about taking a medication with potentially serious side effects when I am not currently experiencing any serious symptoms or flare ups, but I understand (and my GI believes) that it is important to control the inflammation to keep the disease from progressing and from causing irreversible damage.

I'm hoping that my experience of side effects will be the same as yours ...

I've had Crohn's for over 40 yrs and used sulfasalazine most of the time. But the drug that did the most for me when my small intestine was full of ulcers for several years, was Low Dose Naltrexone. It was the only thing that healed me and had few (maybe one- vidid dreams) side effects. Certainly didn't make my immune system less active. Studies have shown that over 80% of Crohn's patients get benefit from it. Studies show that it lowers inflamation in the gut. The international group of GI docs is studying it. Hopefully, it will soon be protocol. Look it up.

hello every one, i have ulcerative colitis. have the medical society found the cure? its about 1.5 year that i m using marijuana as a treatment and i dont use any pill, its not the cure but help you to reduce symptoms especially with proper diet and has its side effects. im searching if there is any better treatment.
health with you

I have a different brand, collagenous colitis (6 years). I manage it by avoiding NSAIDs (like aspirin). Legumes can also cause flares with me. I'm also gluten free (celiac). Stress is a big trigger for colitis. You might consider keeping a food log or an elimination diet, just to see if any foods make it worse. I have a friend with ulcerative colitis, and it is a very nasty disease. Collagenous colitis mostly turns my colon into a large water balloon, but it is stable through diet and stress management.

Hello @omid, welcome to Mayo Clinic Connect. I moved you discussion and combined it with an existing discussion titled Ulcerative Colitis - worried about medications https://connect.mayoclinic.org/discussion/ulcerated-colitis/. I did this so you could meet other members like @dval, @rrf67, and @tra3 who have all talked about their colitis diagnosis and treatments they have tried as well.

@omid, have any medications been suggested to you during your diagnosis with your provider? What sort of diet changes did you make that seemed to help?

Does anyone take quercetin to relieve itching caused by histamine release particularly at night? I take only half dose 500mg rather than 1g but concerned by cautionary notes that could affect my stage 3 kidney condition . I think it may be working after 2 weeks. Don’t go to nephrologist yet so looking for advice.

My heart goes out to all who struggle with this horrible disease. I was diagnosed with ulcerative colitis in Dec 2008, and for years relied on mesalamine with a course of prednisone for the occasional flare - primarily because of concern about side effects of the more potent drugs.

Finally I agreed to start Humira (a TNF blocker like Remicade) in 1/20. It was a disaster. It didn't help at all, I developed neuropathy in my feet and lower legs within a couple of weeks (a well known risk of TNF blockers), and 4 months later had a stroke (CVA) which my GI attributed to my severe inflammation and others to Humira.

Next I tried Entyvio (which my Dr would have started with, but insurance required a TNF blocker failure first). I couldn't maintain therapeutic levels, so Stelara was next. (I couldn't try Xeljanz because of my stroke.) Again some help after each injection, but couldn't maintain therapeutic levels.

A colonoscopy in 8/22 showed severe UC/inflammation and i also had low grade dysplasia for the first time. My last effort was Rinvoq starting that August. By 1/23 my UC/inflammation was reclassified as mild. Unfortunately the dysplasia continued to progress and when it was removed in 4/23, pathology showed cancer. So I finally called it and got a total colectomy in 6/23.

I saw a lot of progress in UC drugs over the last 3 years, so there is more hope today than ever before. But don't underestimate the potential adverse effects (or overestimate the probabilities of success - everyone is different); recognize that insurance companies often interfere with the best approach (ie step therapy requiring failure with a cheaper option than one that is more likely to be effective); and get as much information as you can from an experienced medical team.

Good luck and may you always have hope.