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Update on my Remicade

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Ulcerative Colitis
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Posted 9/15/2011 12:10 PM (GMT 0)
A brief summary of those that don't know my story: I have had Uc for 19 years. In the early years I used to take mesalamines (Asacol, Rowasa) and they kept me out of flares. But than my ole wacky body decided it didn't like mesalamines anymore so enter Colazal. I did well on that until my daughter gave me a stomach bug. Enter 6mp. I did fairly well on 6mp for a short time but than I found my body can't metabolize the 6mp correctly. I would still flare, just not as severe. So than enter the combo of 6mp and Allopurinol. I shortly found out that I'm allergic to Allopurinol (severe abdominal pain and rashes). So I controlled my flares mainly with steroid enemas (in addition to the 6mp and Colazal). But the once again, the ole wacky body became sensitive to steroids. I would get instant side effects from the steroids - hunger, mood swings, insomnia, leg cramps etc.

I debated for two years whether or not to start Remicade. I wasn't sure if I wanted to start on such a heavy duty med. But I couldn't keep using the steroids and even though I want surgery, I was scared. So I gave in to Remi.

I had my first infusion last week (Sept. 7th) and as of now, I can say SUCCESS!!! :) I say as of now because who knows what my body is going to decide to do next??!! I had some strange side effects for 3 days but each day got progressively better. I am now only going to the bathroom 1-2xs a day, no blood, no D (semi solid, which is good for me), and best of all, no more pain! I had that annoying left sided pain that at times when I would walk it felt like someone was taking a dagger to my side.

I go in for my second loading dose on Sept. 21st and than I get to go every 6 weeks. I have an appt with my GI in the second week of October.

It's been a roller coaster for me so I am crossing my fingers that this will keep me flare free for a very long time! :)
Posted 9/15/2011 12:44 PM (GMT 0)
Sherry, I'm so glad it's helping, and hope you have as much success as I've had. Five years later and I'm still enjoying a life that's not controlled by my colon. You deserve to have a life, too!
Posted 9/15/2011 1:32 PM (GMT 0)
YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Posted 9/15/2011 1:45 PM (GMT 0)
Congrats! I started remicade in august because i couldnt get out of a monster flare that had me hospitalized for 17 days. i was stuck at 35 mg of prednisone.. and then we started remicade and I was able to get past that point and even my stools and most of my symptoms were gone in about a week! And no side effects from the remicade were noted. However, I had my second remicade.. and after 2 days it was time for me to cut from 20 mg of prednisone down to 15.. and i flared extremely severely. went from formed stools and giong twice a day with hardly any pain.. to 15 times a day, bleeding, pretty bad pain, etc within 2 days. So now I am back up to 50 mg of pred, and my third remicade treatment is next weds. once I get the remicade treatment, we are going to try the taper one more time and if i flare again, then i will have failed remicade :(. Needless to say.. after improving so much after the first treatment to the piont where i felt almost normal(GI wise at least), to this, is horribly disappointing. This d*** disease is just so unpredictable.

Vin
Posted 9/15/2011 2:40 PM (GMT 0)
That's great Sherry!
Posted 9/15/2011 3:16 PM (GMT 0)
red, i'm so happy it's working for you. i mainly like remicade because i can sleep again. my nights were usually spent in the bathroom or doing crossword puzzles, but now i get a regular 7-10 hrs of sleep every night. it's awesome. i will admit that i still have cramping every day but it's not painful cramping, just uncomfortable. my cramps used to be so bad that i couldn't stand up- even in public places, i'd just fall over- and now that's a thing of the past. i'm still tapering on prednisone and i don't think it affects me taking 6mp and remicade. i haven't noticed any new symptoms or anything.
Posted 9/15/2011 3:22 PM (GMT 0)
Vin, I'm sorry to hear that you are rebounding. I will keep my fingers crossed for you that you can successfully taper off the steroids!

Oh and that reminded bananagirl, I have no more cramping! :) It was pretty horrible for me. I love coffee and I would have my morning coffee regardless if it caused cramping or not (there are just some things I REFUSE to give up! lol) and now I can have my coffee with no cramping at all.

Thanks all!
Posted 9/15/2011 3:25 PM (GMT 0)
That is fantastic that it is working so well! I hope it continues like this. Such great news!
Posted 9/15/2011 4:07 PM (GMT 0)
Glad to hear your feeling good Sherry!
Posted 9/15/2011 4:35 PM (GMT 0)
What awesome news Sherry! It's wonderful you're getting relief, finally, and so soon after your first infusion! Wow!

q
Posted 9/15/2011 4:53 PM (GMT 0)
Whoo hoo! That is awesome! Have to admit I'm a little jealous....still waiting on humira to kick in!

Enjoy your remission! You deserve it!
Posted 9/15/2011 5:01 PM (GMT 0)
Great news Sherry! I was thinking about you yesterday, so glad you are doing better : )
Posted 9/15/2011 7:09 PM (GMT 0)
Terrific news!! That is just wonderful.
Posted 9/15/2011 7:14 PM (GMT 0)
That's a great sign if it works that well on the 1st go. Best wishes!!
Posted 9/15/2011 7:50 PM (GMT 0)
Great news. So glad it is working for you
Posted 9/15/2011 8:45 PM (GMT 0)
Great news Red, let's hope it's gonna be long long term!

I'm due a GI visit in 3 weeks and remicade will be on the cards. Your update has given me a lot of encouragement but after reading Vin's post I'm a bit worried that my on/off pred habit will throw a wrench in the works. I've just started yet another 15mg 'band-aid' so I can function halfways normal.

Were you yourself on pred at or about the time you started remicade?

My sig needs to updated as you can see I lied about "never using pred again"!
Posted 9/15/2011 9:59 PM (GMT 0)
Mackster, can you believe that in all those 19 years I have NEVER been on pred for my Uc?? Actually the steroids I'm referring to are the steroid enemas - yes I was getting instant side effect from THOSE; not an easy feat it seems but I managed! lol But no, I tapered off the enema's before I started on the Remi. I was on a short course of them to help my mild flare get under control. I was off them for about 1 week or so before I started the Remi.

I think that is one reason I responded so quickly to the Remi; being mildly inflamed as opposed to severe.

Thank you all for your kind words! :D
Posted 9/16/2011 12:19 AM (GMT 0)
Sherry, so glad to hear you're doing well and you are enjoying your coffee again, lol!

I hope this remission continues forever...

Posted 9/16/2011 2:44 AM (GMT 0)
Sherry this is great news!!  I hope this keeps you feeling well for a long long time!!
Posted 9/16/2011 3:54 AM (GMT 0)
Dynamite news, Sherry! So glad the Remi got rid of your AM cramps. Is your right side behaving, too? / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/16/2011 11:49 AM (GMT 0)
Old Hat, yes my right side doesn't hurt either. Sometimes if I eat something I'm not supposed to, it tends to act up because of the diverticulosis. But for the most part that side is doing well too :)
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