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Remicade Healing

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Ulcerative Colitis
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Posted 10/20/2013 8:20 PM (GMT -7)
I started remicade on October 11th and my next treatment is this Friday the 25th. I have already noticed improvement and I know it's not from prednisone. I am currently on 20mg of pred, tapering off from 40 and without remicade, 20mg does nothing for me. I have severe pancolitis. My GI said my colon goes in his record book for one of the worst he's ever seen.

But anyways... I have noticed improvement like less abdominal cramps and they're not as severe and I don't go to the bathroom 20 times a day like I was. I still get up 3-4 times during the night to go to the bathroom though and I was just wondering if there were any remicade veterans out there who could tell me if this will get better with more remicade treatments. 3-4 times is a LOT less than I was getting up before but it's still annoying. All I want is a full night's sleep with no interruptions. Will I ever have that again?
Posted 10/20/2013 11:09 PM (GMT -7)
Hi it will get better with time with each treatment of Remicade.
Remicade will put you into remission.
Posted 10/21/2013 4:10 AM (GMT -7)
If the Remicade is effective, your wake-ups will decrease, but this may be slowly. In my case I know my mind was conditioned to wake at the first sensation of anything moving into my sigmoid because I was so concerned about an accident in bed. I also still go to the bathroom just as a precaution any time I awaken completely during the night. At the most now it's once a night; a lot of nights I sleep through.
Posted 10/21/2013 6:09 AM (GMT -7)
Remicade is effective, but how long it will take depends on how bad you are off. And it sounds like you have a lot of inflammation and damage from your uc flareup, if you are going to the bathroom that often. Remicade works for many, but it will take a while for it to heal the damage from your flareup. I would expect it would take at least 3 Remicade infusions, maybe even 4 until things are back under control. Stick with it, and any little improvement can make a huge difference in quality of life (big difference between waking up once per night vs several times).
Posted 10/21/2013 6:51 AM (GMT -7)
Thank you guys. I kinda figured it would take a little time because it's not like it can heal over night. Don't get me wrong I hoped it would lol. I have noticed improvement already which makes me super happy. I'm definitely not 100% but even a little improvement is great based on where I was. I was miserable and there was nothing I could do. I hate that. I plan on sticking with remicade as long as it works. I love my infusion place. Comfy chairs, warm blankets, TV to yourself with a bunch of channels and recent movies, snacks, drinks. Love it.

Judy2- I was reading your signature and it looks like you got a lot of bad things from steroids. I'm assuming prednisone? Can I ask how long you were on steroids and how many milligrams? I'm always scared I'm gonna get one of those nasty side effects.
Posted 10/21/2013 8:58 AM (GMT -7)
I'm getting my 3rd Remicade infusion this Friday. I noticed a big change right after my first one, but it has since slowed down. I am still headed in the right direction, it just seems the last part takes longer. My GI told me only 10% of people with UC had it as bad as me, he was kind of shocked when he did the colonoscopy and saw how bad it was. He told me it would take a few months before I would heal from this because there was so much damage. My goal is to be healed by the end of the year.

As for the steroids, I was started on 40 mg, been on it for 1.5 months, just tapered down to 20 mg. When I was on 40 mg, I suffered insomnia, huge appetite, acne and night sweats. Now that I'm down to 20, the night sweats have lessened and I am able to sleep more. The acne has decreased and so has my appetite. Hoping to fully get off of it soon.
Posted 10/21/2013 9:05 AM (GMT -7)
I just had my 3rd infusion last Tuesday. I can say that I didn't see a big imrpovement with the first two, but this third really made a difference (which may also have to do with the fact that my dose was increased to 10mg/kg).

Anyway, I have slept through the night for the first time in months. The pain has gone from so bad it caused me to throw up to mild cramping. While I do still have blood and mucous, I am down to about 3-4 bathroom trips/day as compared to 10-12, and the urgency that would hit seems to have subsided.

So, yes it does take time, but the fact that you are already seeing improvement is very encouraging.
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