Remicade usage for untreatable microscopic colitis

@kaybechtel, Tagging a couple members who have been on infliximab (Remicade) for microscopic colitis or another condtion around Mayo Clnic Connect so they can tell you about benefits and side effects they've experienced or a loved one has experienced @free73kja @pb50.

Which side effects you've learned about with Remicade are the most concerning to you, kaybechtel?

@lisalucier
My issues are the frequent bouts of relentless fatigue, and the flare-up break throughs.
However, it has helped lessened my colitis attacks.

@lisalucier the increased risk of lymphoma andcancers. Increased risk of lower immunity I do a lot of work with low income people that receive poor health care.

I remember the low immunities, however I was not aware of lymphoma and cancers.
Thank you

I also have microscopic colitis but in spite of relapsing twice and now taking Budesonide as a maintenance drug, it has been a life saver.

But for six years I also have taken Remicade for rheumatoid Arthritis (RA). And it too has been a lifesaver. I have zero side effects from
It.

@pb50 I was on budesonide for 15 years. I still had public accidents once every 1-2 months, bloating, thinning skin, bruising and many other side effects. My last bone density test showing lower back bone thinning was the last straw as some research shows a possible link. I had my GI wean me off. He didn't instruct me correctly and I went into adrenal crisis and could have died. It was a horrific experience. He then instructed me to see an endocrinologist to wean off. It took 6 months. I am sharing this because if you ever decide to wean off due to side effects, make sure you do it the right way.

@donnagail gosh how awful! And thanks for the heads up. Intreated or ineffectively treated Colitis was the worst 7-8 months of my life. So today i am blessed that -knock on wood -‘3mg Budesonide is doing the trick for me. I pray that continues.

@kaybechtel I'm not on Remicade, but I have been on Humira for about 10 years, and the risks are similar. For Remicade the risk of lymphoma is about 4 cases per 10,000 people per year, which is higher than the normal population, but the absolute risk is still low. As with Humira, you would get quarterly or bi-yearly blood tests to check for this.

Although I have a risk of lower immunity, I can honestly say that I have not noticed much difference between having active Crohn's disease and having lower immunity from that, and being on Humira and potentially having lower immunity because of the Humira.

Another thing to keep in mind is that you do not necessarily have to be on Remicade forever. You can try it, see if it helps and then decide to stop if it does not.

I've been on and off Budesonide for over 10 years. Having Celiac, my previous MD always blamed Celiac or the colitis. Every time I went off, I relapsed within a couple of days. I even switched my diet 100%, and the fecal incontinence started getting worse. I switched MD's and told him I was a problem case. Now, I've been diagnosed with Pancreatic Enzyme Insufficiency, Chronic Moderate Gastritis, Barrett's esophagus, and they are watching my liver. I'm starting Entyvio, hopefully very soon.