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Please share your Remicade success stories

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Ulcerative Colitis
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Posted 1/5/2012 11:16 PM (GMT 0)
After trying prednisone, enemas, suppositories, etc. I UNWISELY decided to give myself a break and dropped down to one mg of Pentasa a day, plus some homeopathic meds. After two weeks I thought I was going to loose my mind. Horrible diarrhea, urgency, I was loosing a pound a day, etc.

My Dr sent me to a Dr in Miami (I live in Central America where UC is very uncommon and we hardly have any meds for it). The Dr in Miami has put me on Lialda, Inmuran and Remicade.

I just had my second infusion (two weeks apart). After my first infusion I stopped seeing blood, but that was about it. Now the blood is back, but the diarrhea has gone down considerably. I still have a lot of mucous though.

I really need anyone out there who has had success with Remi to share their story with me, as I feel like I'm hanging on by a thread. My new mentality is that it took me 3 months to get this sick, I'll give myself three months to get better.

If you did not have success, please don't share your story. I don't mean to be rude, I'm just looking for some hope.

Thanks!
Posted 1/6/2012 1:20 AM (GMT 0)
I was on Remicade all together for about 8 years. I stopped and started a couple times. Both times I was symptom free within 1 -2 months. The last 6 years I was on it were great, I had zero symptoms. So much so that the only thing that reminded me I had a disease was when I had to go for my infusions!
Posted 1/6/2012 5:18 PM (GMT 0)
i've been on it since september and feel fine. doctor said he wants me an it for a year and if i have no symptoms, than i can go off. so excited!!!!!
Posted 1/6/2012 7:21 PM (GMT 0)
I'm so happy for you Cupcake and Joanna! It really shines a ray of hope on my situation.

I keep reminding myself that first my antibodies will stop attacking my colon, then it needs a chance to heal. This will take time.

:)
Posted 1/6/2012 10:18 PM (GMT 0)
I guess I can be considered a success story as well. I am unable to use mesalamines so my choices were limited. After not being able to properly metabolize the 6mp, I decided to go on Remicade. After the 1st infusion, I noticed a difference, not 100% and it wasn't really until my 3rd one where I felt great! I can tell when it's wearing off, which is in about 6 weeks and I go in every 8 weeks for my infusions.

I am having a bit of a rocky ride after this infusion tho. But I don't think it's my Uc but rather, the day after my infusion I got sick and had to be placed on antibiotics.
Posted 1/7/2012 1:05 AM (GMT 0)
Guategirl- stick with it, Remicaide has changed my life! 2011 was the best and worse year of my life. After 5 years in remission (and taking NO meds) I had the worst flare since being diagnosed in 2000. I went downhill fast, the flare started in August and by October I was in the ER twice and was admitted for a week long stay. Bouncing backwith Asacol (up to 6 pills daily) and 40mg daily of prednisone later I was feeling better (and fat, thanks to steroids). Everytime I started to wean off the steroids I would get sicker and sicker.

Around January I started 75mg of azasan daily hoping that would allow me to get off of the steroids- no such luck. One night in March I got home from work and could not stop vomiting. I had enough and found myself back in the ER again. Fed up and tired from the fight I refused to allow any more steroids. It was then I had my 1st remicaide infusion. By my 3rd infusion I felt like a different person. Looking back I couldnt believe how sick I was and how I ever survied without remicaide. My quality of life has returned and in July I was able to walk down the aisle and say I do to my husband without any worries or concern.

Keep your head up, and hope you start to feel better soon!
Posted 1/7/2012 1:11 AM (GMT 0)

jabby826 said...
Guategirl- stick with it, Remicaide has changed my life! 2011 was the best and worse year of my life. After 5 years in remission (and taking NO meds) I had the worst flare since being diagnosed in 2000. I went downhill fast, the flare started in August and by October I was in the ER twice and was admitted for a week long stay. Bouncing backwith Asacol (up to 6 pills daily) and 40mg daily of prednisone later I was feeling better (and fat, thanks to steroids). Everytime I started to wean off the steroids I would get sicker and sicker.

Around January I started 75mg of azasan daily hoping that would allow me to get off of the steroids- no such luck. One night in March I got home from work and could not stop vomiting. I had enough and found myself back in the ER again. Fed up and tired from the fight I refused to allow any more steroids. It was then I had my 1st remicaide infusion. By my 3rd infusion I felt like a different person. Looking back I couldnt believe how sick I was and how I ever survied without remicaide. My quality of life has returned and in July I was able to walk down the aisle and say I do to my husband without any worries or concern.

Keep your head up, and hope you start to feel better soon!

Wow, my first infusion I was getting better, by the second I started flaring, I am due for the third in two days, I'm hoping for a miracle.
Posted 1/7/2012 1:30 AM (GMT 0)
I have 95% success after 9 months. I would be sympton free for a few weeks then it would come back a bit, i would get so discouraged and upset. It took awhile for me, so hang in there, take it day by day one step at a time and ask me a million questions if you want.
Posted 1/7/2012 1:39 AM (GMT 0)

Beth75 said...
I have 95% success after 9 months. I would be sympton free for a few weeks then it would come back a bit, i would get so discouraged and upset. It took awhile for me, so hang in there, take it day by day one step at a time and ask me a million questions if you want.

ok, here is one, how much ML/KG of remicade do you take every 8 weeks.
Posted 1/7/2012 8:25 AM (GMT 0)
Remicade has done wonders for me. I have been in and out of hospitals before remicade. It is worth an honest try. The only downside is that you may have to be much more careful with regards to getting sick or injured. both can be dangerous.
Posted 1/7/2012 8:08 PM (GMT 0)
Thanks everyone. I needed to hear this.

4 days after my second infusion and I'm wondering why I'm doing this, as it feels like I'm back to square one. Been to the bathroom 7 times this morning with mucous and blood. Saw my first semi formed stool in months though! What does this all mean? Little rays of sunshine?

I'm trying so hard not to get discouraged, so thanks so much for your posts!
Posted 1/7/2012 8:13 PM (GMT 0)
Somedude:
I take 500 mg per kilo. My doctor said to up it to 750 mg per kilo if I stopped seeing results. Since I haven't seen "results" I'm wondering if I shouldn't go up anyway???

Jabby:
I'm so happy for you! Having a symptom free wedding day is definitely a dream come true! Congratulations!!

Beth75:
I kinda feel like I'm headed where you are: a few weeks of symptom free and then as it wears off it's back. Thanks for the offer, I'm sure I'll have lots of questions.
Posted 1/8/2012 2:29 PM (GMT 0)
It can take up to 5 infusions to get into remission. That's how long it took me (plus finding the right combo of rectal meds). I've now been in remission for 3 years thanks to Remicade.
Posted 1/9/2012 1:09 AM (GMT 0)
Somedude, sorry that is one thing i dont know.
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