Started remicade - Story & Questions

My story/rant:
After flaring for the past 8 months with no help from Liallda, Uceris, Entocort, Rowasa, steroid enemas, Canasa, 6-mp, and diet modifications, I started Remicade today. My doctor and I have been discussing the possibility of using remicade for my past few visits as I am not improving despite all the other meds and things I have tried. I was initially really scared and did not want to take the step of using Remicade because biologics seem to me as kind of the last step in meds. But last week was the ultimate straw for me.

I can deal with the frequency and I've kinda been able to control my urgency for the most part (at least no accidents as of lately). But the tiredness and the cramps and the pain was the last straw. I was visiting a friend last week and we went out to dinner (which we have been planning for months) and I was struck with the worst abdominal pain and discomfort I have had with my UC. It happened for no reason that I could think of. I didn't eat anything that would have caused it and I took my meds like always. On top of that I had major urgency and was stuck in the bathroom of the restaurant. I was so uncomfortable and annoyed at my UC I ended up crying in the bathroom. What was worse was I was staying with her for the night and she only has one bathroom in her apartment... I felt awful. That situation made me realize how many other times in the past 3 years that has happened to me. Quite frequently.

Anyways, I had a Dr appt yesterday where he looked at my blood work for Thiopurine (not sure of spelling) and saw that I was in therapeutic range of my 6-mp meds. I have been on 6-mp for the last few months with little notice of any changes (maybe only slightly less blood). So we made the decision to start Remicade.

The Remicade infusion itself was nothing. But the Benadryl they gave me as a pre-med knocked me out. I ended my infusion at 4:30 and slept the rest of the day/night. My question is do you always have to take the benedryl? it just made me feel so exhausted. Maybe because I'm small, but it really knocked me out!
They also pre-medicated me with Zantac for acid. I have researched this forum and the internet and do not remember reading about Zantac... anybody else take Zantac with Remicade pre-meds?
Another Question: I can't remember if my doctor told me to stop or keep taking the Lialda and it is not in my notes from the visit. I emailed him and asked but have yet to get a response...for those on remicade do you only take remicade or other maintenance meds? what about my Canasa suppositories? I know I am supposed to keep taking the 6-mp.

Sorry this is a little long, kind of just ranting....Thanks!

Greetings from the infusion center! (I'm about 20 minutes into an infusion right now.)

I had been taking Asacol HD before I started Remicade, and I stayed on it till my 3rd loading dose. It won't interfere with the Remicade at all, so you can keep taking it.

I don't get any pre-infusion meds (Tylenol or Benadryl), so they're certainly not necessary.

Zantac hasn't ever been suggested to me. If you're this sick, it's not gonna help much anyway.

Starting Remicade can be very scary, but there are lots of folks on here, myself included, who were pretty much rescued because of it. Remicade in conjunction with hydrocortisone enemas has returned me to normal (minus being able to eat popcorn. Sadness).

I never had any pre-meds at my remicade infusions either. I was always pretty alert and watched who wants to be a millionaire at all my infusions.

as for lialda, I personally wouldn't stay on it if it hasn't been working. just one other drug you are putting into your body.

I took a few things along with remicade though so I will never know what actually worked- canasa, prednisone, 6mp, cipro/flagyl, Prilosec, and Zofran. I have a feeling 6mp played the biggest role in my remission just because when I had to stop it, I felt terrible again even though I still had remicade infusions.

Thanks all for your input and experiences! So far i haven't noticed any changes, but it has only been 24 hours so I'm optimistic. Hopefully remicade works for me like it has worked for some of you.

When I was getting my infusion yesterday there were two other ppl in their getting their treatments as well and neither one of them seemed to be as tired or out of it as me, so idk if they had to take the bendryl. I'm gonna ask next time I go in. But then again I am afraid of having an allergic reaction...

Sciencegirl, I'm with you. I dont know how much Zantac would help anyways but I was so exhausted from the benadryl I couldn't even as the nurse that question lol.

I agree bananagirl, the lialda doesn't seem to be doing much anymore and I would rather not have to take those 4 large pills every morning as well and put one more medicine in to my body. I'm gonna see what my Dr replies to me but I feel its unnecessary.

I get Benadryl and Solumderol before my infusions. Sometimes I feel really out of it from the Benadryl and sometimes not. I think it depends on how much sleep I got the night before. But I'm already on Prilosec for acid reflux disease so I can't comment on that because I've been on that for 5 years - preRemi.

As for the other meds, I was on 6mp when I started Remi along with Colazal. With all 3 of those meds I was majorly heat intolerant and I developed rashes. I discontinued the 6mp eventually because I was developing foot neuropathy which is a known side effect (it's since has reversed since stopping). But I'm still on Colazal soon to be on Pentasa because my GI doesn't think that Remi alone will keep me in remission. Btw, I've been on Remi for almost 2 years and in remission for a year because of the Remi. So I hope you have good results as well.

Good luck!

I take no pre-meds, and can go on with my day, no problem.

I was taking the benedryl as well -- totally knocked me out. Then I started taking Claritin or Allegra myself before the infusion. It worked well and I didn't get sleepy. It's great that you are feeling so well!