Thinking about going on Remicade

[amita]

Hi, I am new here. So sorry if I break any of the forum's rules. I have had crohn's for about 20 years. I have managed it reasonably well. I now have a few complex perianal fistulas that refuse to heal. Since I have crohn's, my doctor has advised the surgeon against performing surgical procedure since it may lead to incontinence. So the GI has suggested remicade. Does anyone have a story to share about using remicade for fistulas primarily?

I am very scared that I am simply trading in my problems for different ones. I am also afraid of dying on my family. Any help would be appreciated. thanks.

 

[Lisa]

Hi and welcome amita.

I have been on Remicade for over 10 years now, I was finally put on it after developing perianal and rectovaginal fistulas. Since starting the Remicade, the fistulas closed up and I have NOT had any further issues from them!

Everyone is different, but for me, the medication has helped me live a full and normal life!

 

[ronroush7]

Welcome. I am sorry that you have this disease. Everyone responds differently. I am sure that someone will come along that can help.

 

[Madhu]

Hi Amita, my husband has been on Remicade for the past 1 year for his Crohn's and perianal fistulae. He had setons put in initially to drain them out and then Remicade helped close the fistulae. They are now closed, and personally, Remicade saved our lives.

Sending good luck your way!

 

[ronroush7]

Hi Amita, my husband has been on Remicade for the past 1 year for his Crohn's and perianal fistulae. He had setons put in initially to drain them out and then Remicade helped close the fistulae. They are now closed, and personally, Remicade saved our lives.

Sending good luck your way!

That is fantastic, Madhu.

 

[cbd]

Remicade helped me and changed my life. Recommended.

 

[amita]

Thanks for the responses. I very much appreciate you taking time out of your busy day to post a reply.

CBD, would you care to elaborate? How did it help? And Madhu, diud the fistulae close after one infusion or several? Any side effects?

 

[Mehita]

My son was inpatient when he had an abscess and fistula (amongst other Crohn's symptoms) and was started on Remicade during that stay. Halfway through is first infusion, he asked for food. Whoa!! By his second infusion, all of his labs were normal. By his third, he was in clinical remission and the abscess and fistula were gone. Now, all that being said, Remicade doesn't work that well or that quickly for everyone, but he has been in remission for three and a half years now at 7.5 mg/kg every six weeks. Best decision we've made... just wish we should have started it sooner.

 

[ronroush7]

My son was inpatient when he had an abscess and fistula (amongst other Crohn's symptoms) and was started on Remicade during that stay. Halfway through is first infusion, he asked for food. Whoa!! By his second infusion, all of his labs were normal. By his third, he was in clinical remission and the abscess and fistula were gone. Now, all that being said, Remicade doesn't work that well or that quickly for everyone, but he has been in remission for three and a half years now at 7.5 mg/kg every six weeks. Best decision we've made... just wish we should have started it sooner.

That is great, Mehita.

 

[Madhu]

And Madhu, diud the fistulae close after one infusion or several? Any side effects?

To give you a detailed explanation, when he had his first infusion he had several problems. Loss of appetite, weight loss, terrible abdomen pain. I can just keep going. 3 days after the 1st infusion, he asked for food and after that his appetite came back with a bang. 10 days after his 1st infusion, he had his 2nd infusion and he had already gained 2 pounds. By 3rd infusion, he started going back to work (He was bed ridden for 3 months at home).

He had the setons put in June 2015. Dr said it should remain for atleast 6 months after the 1st infusion. He had an MRI done in Feb 2016. It showed the fistulae had healed a lot, so the surgeon removed the setons. Until the setons are there, it wont close. 3 months after removal, we met the surgeon this month and she confirmed the fistulae are healed and closed. He has been in remission since Feb 2016.

The only side effect he had with Remicade so far was acne on his back. Once his dosage was adjusted, they were gone too. Remicade really is a miracle medicine for most of us. I hope you go for it and it works out great for you too