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Starting Remicade either today or tomorrow

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Ulcerative Colitis
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Posted 3/19/2012 3:10 PM (GMT 0)
I was diagnosed with UC about a year ago, since then I have been admitted to the hospital three times (currently in patient). I have only been here for five days (last time it was over two weeks) and I was scoped yesterday and they found moderate inflamation, I have been in this current flare for over a month, they started me on prednisone, cortifoam enemas, and canasa three weeks ago, in addition to the Lialda that I have been on (4 pills a day).

Last week it got so bad I couldn't keep anything down, my heart rate was 106, BP was 160/100, so my GI sent me to my local er. They ended up admitting me and transferring me to the hospital where my GI is located. They had me on a clear liquid diet, IV fluids, pain meds, and IV steroids. My potassium was also very low (2.9, up to 3.0 today with taking the nasty potassium mix they gave me). They are awaiting the tests for the CMV and if it comes back negative I will be starting Remicade.

What are people's experience with Remicade? How quickly did you respond and were there any ill effects? I know that everyone responds differently, but I would like others in put as to how it went for them. I also have Celiac Disease and IBS.

Sorry if my post is a little disjointed, they have me on some pain meds.
Posted 3/19/2012 3:23 PM (GMT 0)
You're making total sense...I hope all is good with the remi if you're able to go on it.

It's frustrating to hear it's been such a terrible ordeal for you, especially having to deal with Celiac as well as UC.

Your updates are appreciated.

q

Posted 3/19/2012 4:54 PM (GMT 0)
i really hope the remicade will help you!! when i was in the hospital last year, i was in the same boat as you. the first remicade infusion made me feel better. i've had 5 so far though and it's stopped working. after the 4th one, i was feeling ok, but it was like i never even had a 5th one. i'm going in to get another one in a week, but if it doesn't help, i'm not gonna stay on it. it gives me a lot of joint pains and headaches and i'm in such a bad flare now. i thought it was supposed to be a miracle drug, but alas, it's not.
Posted 3/19/2012 5:02 PM (GMT 0)
I am not on Remicade but I am hoping it's your wonder drug. From posting here, I've seen all different results with Remicade, some were almost instant, others have taken a much longer time to respond. I hope you respond quickly, you need a break from this for a LONG time.
Posted 3/19/2012 5:20 PM (GMT 0)
I am hoping it is a miracle drug, but I also want to help it along its way. I've actually never taken probiotics and I'm starting to think that is something I really need to get on. Does anyone have suggestions of ones that are good to start on? Preferably gluten free! :)
Posted 3/20/2012 5:02 AM (GMT 0)
My daughter is 6 and may possibly be starting remicade Wednesday. Uggghhh...so confused hate this. So ironic had levels tested for 6mp , the day they came back she started to flare all tests and levels were perfect.. So y this flare now.????????????? Any advice for kids
Posted 3/20/2012 1:31 PM (GMT 0)
Sorry to hear about your daughter, I would suggest starting your own thread so that you can get information specific to what she is going through. Take care
Posted 3/21/2012 12:05 PM (GMT 0)
Remicade was the best thing ever happening to me. Go for it.

Diarrhea had stopped withing 2 - 4 days for me. I was sitting on the toilet crying because everying was normal again.

I wish you all the best.
Posted 3/21/2012 12:28 PM (GMT 0)
Oh wow, thank you so much for the positive information on it! HOw wonderful would it be to cry from joy and not pain on the toilet! They are awaiting the TB results before they can start it, but hoping the results are back tomorrow.


They had said I could get out today but had a rough night with bleeding (it had gotten better) and urbancy, so I have to stay in longer. They are going to start oral steroids today and see how they go.

Thanks again... You all are so great
Posted 3/21/2012 12:45 PM (GMT 0)
I'm another Remi success story. I was yo-yo'ing for years with minor inflammation; sometimes severe inflammation. Nothing they threw at me seemed to work which is why I started on the Remi. I notice an immediate improvement but it was short lived. It wasn't until between my 3rd and 4th infusion that I felt really great. I still have gut issues from my IBS and diverticulosis but my Uc has retreated. I have been feeling great for the past couple months. I hope you have the same success as I have; you need a break!
Posted 3/21/2012 1:07 PM (GMT 0)
Glad to hear another success story! I am very helpful and more optimistic than I have been in a while!

Sorry for the typos and spelling errors in my posts... I'm typing from my iPhone and can't always see the whole post before I submit it.
Posted 3/21/2012 7:00 PM (GMT 0)
I was on Remi for 5 1/2 years, and have had two clear colonoscopies, and have been on maintenance meds for almost two year now (Asacol 6 per day.) I had almost the same reaction as Aldrina; except my world changed overnight. The next morning I had one long bm, and I too cried because the pain was gone and the blood as well. My doc also started from the big guns down, believing that the powerful med could heal and then move down to maintenance meds. Which is exactly what happened. I feel better than ever and have just lost 10 lbs because I've been really exercising and feeling awesome!
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