Brand new To UC- extreme flare- Remicade question?

in some cases Remicade can be used as a rescue drug, and then withdrawn in favor of a maintence plan that used other drugs such as mesalamine. this is not common, and you generally stay on the the biologic (or any drug for a long time).

I would not base the decision on beginning Remicade on whether it means you are on it for life. Even if you need constant medication, 1) you need it, and 2) it is only Remicade until there is something better. So, if in 10 years there is a gene therapy or a gut microbe therapy that actually cures UC, you are only on Remicade for 10 years not life.

In any event, it is not an issue of being physiologically unable to come off the drug once you start it. You do not become addicted to Remicade. It is a question as to whether you would flare again, and youmight try to go off Remicade in 20 or 30 months and find that you don't flare. Start because you need it - don't not start because you might continue needing it.

all this said, I believe you still have c.diff. There are some people that steroids, even IV steroids, do not work for. There are some other reasons you might not see any improvement at 60mg of pred - BUT, to my understanding, the #1 reason people see no response at all to pred is because they have a c.dif infection - no matter what the lab test says.

I would seriously consider finding a center to administer FMT for the treatment of c.diff before doing a biologic (or having surgery) if I was not responding to pred. I am not a doctor, but that is my opinion.

Thank you both for the response. Are either of you on Remicade or another biologic? The c diff test was negative a few days ago- and II am still on flagyl for I‎t. During my colonoscopy within my hospital stay, my GI said he was not very concerned about the c diff so much as the severity of the colitis.

I’m not yet on a probiotic- they discharged me on a bland diet and am still following that. Have been nervous to add anything else in.

I’m so sorry for everything you’ve been through.

I agree with DB and Totes. I think you need to be tested again for cdiff. I believe the tests aren’t always that reliable, and they often need to be done more than once. In light of your current symptoms and the fact that you’re not responding to prednisone, I would insist on being tested again. No UC meds are going to make much of a difference if you do in fact have cdiff and it’s not being treated.

In September, I was also hospitalized for cdiff, which caused a UC flare. I started Humira (a biologic similar to remicade). I had been very hesitant to start a biologic, but I was so sick that I was willing to do anything to get better. It’s been working great for me, I’m actually very sorry I didn’t do it sooner. I know how stressful this whole thing can be. Especially with everything else you’ve been through.

Like DB said, you most likely won’t have to take a biologic for life. I truly believe that better/safer medications are coming at some point. May not be tomorrow, but I do think that it’s likeky within the next 5-10 years we’ll have more options with less side effects.

Right now, try to just focus on getting better. A biologic will do that, and it’ll do it faster than your other options. Worry about the other stuff later.

For what it’s worth, my GI said that we could talk about coming off the Humira if my colonoscopies show remission for a few years. I don’t know if I’ll even attempt it, but I guess the option is there.

Crispix -

Thanks for your reply.

Did you start Humira while still having c diff? How did you know for sure you were over I‎t? I️ am ready to start the biologic but if I️ still have c diff I️ don’t know if that’s even safe?

Would you share your symptoms before the Humira and after- how quickly you improved etc? I️ would really appreciate any additional insight!

Thanks for the kind words. The worst was we missed our daughter memorial service because I‎t was the day I was hospitalized

I was on humira for 11 months, first bi weekly than weekly for 3 months with no improvement. I ended up in the hospital on October 20th started Remicade while there and am doing a whole lot better now. Even reducing my preds now and still doing really great. Still pretty tired now because it does take time to heal from a bad flare and this dreaded disease. I wish I had started Remicade sooner.

If this med continues to work for me for a lifetime I will be eternally grateful.

Thanks for all the feedback.

I definitely still had cdiff when I started the Humira. I was in the hospital for 9 days and started the Humira on day 8, the day before I was discharged. When I was discharged from the hospital, I continued taking another 2 weeks worth of antiobitoics for the cdiff (flagyl 3x per day and vancomycin 4x per day), and 40 mg prednisone, which I tapered 5mg every 5 days.

They debated whether or not to give me the Humira before they knew the cdiff was gone, but I wasn’t getting any better after being on IV antibiotics for 7 days, so they decided they had to treat the UC and the cdiff simultaneously. Before I took the Humira, I was really sick. I was going to the bathroom more than 15 times in a 24 hours period. It was straight liquid D, blood, stomach pain/cramping, and severe stomach and colon cramping and spasms while I was going to the bathroom. I honestly thought I was dying.

I would say within a day or two of the loading doses, I started to see small improvement. I wasn’t going to the bathroom as often, but it was still liquid D. The Blood went away a few days after that. The pain went away almost immediately.

I’ve been seeing steady improvement since then. I was able to taper the prednisone with no issues at all. I’m praying the cdiff is gone for good since I finished the antibiotics in early October after a 24 day course and haven’t had any issues since then. I’m now at almost 8 weeks on Humira and I feel really good. For the last 3-4 days I’ve only gone to the bathroom twice within the first hour of waking up. The rest of the day has been very uneventful and I am so grateful! No pain, very slight urgency with the second BM in the morning, no blood. My BM still aren’t completely solid. They’re not D, but they’re not back to my old normal yet, but I finally feel like I’m on the right track.

I really wish I had gone on Humira sooner. I think I probably could have avoided cdiff and how incredibly sick I got had I not been mildly flaring for over a year. I kept hoping that things would get better. That the flare would somehow end on its own and the lialda I was taking would somehow be enough. I don’t have any regrets at all about going on the Humira. I feel better now than I have in a long time, and I really think I’m going to continue to improve from here.

Definitely ask the doctor about a second cdiff test just to confirm that you don’t have it. If you do have it, get back on antibiotics and ask your doctor how soon he recommends starting the Humira. They prefer you to not have an active infection when starting, but I’m sure it will be considered if the situation warrants it.

I don’t feel that the Humira effected my ability to fight the infection. It took forever to get rid of, but it seemed to be a pretty severe infection from the beginning. I didn’t see any setbacks as a result of starting Humira.

Let me know if you have any more questions. I’m more than happy to help. I really hope you get this under control soon and start to feel better

Thank you for sharing. II go to doc today and I guess final choice is between Humira and Remicade. II am leaning towards Remicade And II hope can get started today