HealingWell
Search Close Search
☰

Remicade

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/6/2015 8:49 PM (GMT 0)
Hi Everyone,

I'm hoping to find someone that can give me their thoughts on Remicade. I started Remicade on September 18. I started this after my Humira stint failed as my body rejected it.

After my first infusion, I noticed that I was very, very tired, but after the first couple of days I felt fine. And I had solid stools which was fantastic after 30 years with UC. I noticed no other symptoms or side effects.

I had my second infusion this past Friday and since then I've had terrible, terrible diarrhea. After 3 days, I feel drained (no pun intended) and can't keep any food in.

Has anyone else dealt with this? Could Remicade have caused a flair?

Thanks!

Julie
Posted 10/6/2015 8:54 PM (GMT 0)
I'm on remicade as well and I think you need to be tested for c-diff. I've had it once and the volume of diarrhea I had was unreal not to mention the odor. I'm also concerned about your electrolytes...are you able to stay hydrated? My potassium was 2.7 after 48 hours of c-diff diarrhea.
Posted 10/6/2015 11:30 PM (GMT 0)
We're you flaring prior to the first infusion? I know for me it took 3 infusions before I saw a huge difference. And that seems to be true for many others.
Posted 10/7/2015 2:22 AM (GMT 0)
After flaring or simmering for nearly 20 years before I started Remicade, it was sort of a roller coaster after my first infusion. After the loading doses I started to get better and better, tho I definitely had a wide array of symptoms before it actually took "hold". My roller coaster lasted for about a year and a half before I actually entered remission. And I mean a true clinical remission, scope and biopsy verified. So don't give up hope yet. For some it may take longer to help.

However, if this trend continues for you definitely tell your GI.
Posted 10/7/2015 2:30 AM (GMT 0)
I actually had my first Remicade infusion today.

Afterwards I spoke with the nurse and she said, for some people, they don't notice much of a difference until after their fourth, fifth or even sixth infusion. She was telling me not to expect to wake up feeling completely better tomorrow.

I told her that in some patients I have heard that it starts working immediately or at least within the first 24/48 hours. She said while that is true, that isn't something they ever tell patients because they don't want them to give up on the Remicade quickly if it doesn't work right away.
Posted 10/7/2015 2:36 AM (GMT 0)
I agree with being tested for c. Diff ASAP
Some people see an immediate improvement and than they either continue to improve very slowly or they even get a bit worse before getting to remission
It's individual and you have to give it patience
Posted 10/7/2015 4:09 AM (GMT 0)
I think the crazy "48 hour remission" success stories are pretty rare and/or apply to people who needed only a small amount of healing to see symptom relief. I remember going in for my first, second, third infusions and being so excited because my UC was finally going to go away! I've now had 5 infusions and I am much better but definitely still healing. Perhaps you are just seeing a continuation of UC symptoms because the Remicade hasn't actually had a chance to make a difference yet?
Posted 10/7/2015 9:23 AM (GMT 0)
I've been flaring since September 6th after a two month period of feeling pretty good and prednisone free over the summer. I had thought I was in remission, possibly, until this flare started. I immediately got on a 3 week taper of pred to try to nip the flare in the bud and give me some temporary relief while my GI and I decided what was next. Last week I took my last 5g dose of pred and was soon after in probably the worst shape I have been in.

This past Saturday I started a diet of just hard boiled eggs, chicken breast, hamburger patties, sauteed veggies and water. I had seen a youtube where a guy(med free) said this was his go-to diet to get him out of a flare. I was fearing going into my first infusion in such rough shape, like I would have had to spend the whole infusion in the bathroom there, so I was looking to try anything.

Amazingly, it(the diet) started working rather quickly. On Sunday I had D all day but not much cramping or urgency and no blood whereas I had been bleeding and in pain every day for about the past week before that. Monday I was even a little better, still no blood, a little formed BMs and less time in the bathroom overall. Tuesday I had one BM before my first ever Remicade infusion and two later in the day which was such a relief seeing as just 3 or 4 days ago I was having probably near 20BMs/trips to the bathroom a day,

So while the "48 hour remission" stories aren't that likely. I feel like this combination of the last few days could hopefully lead me to quick success with Remicade.
Posted 10/8/2015 12:21 AM (GMT 0)
I've been on remicade since 2006 and it has been great for me. I was scheduled for surgery and decided to give remicade a try and I'm sure am glad I did. I did start feeling better right away, but I did not go into remission for a while. I can't remember how long it took, but it did give me back my life. Be patient.
✚ New Topic ✚ Reply