Questions about Remicade

[moneybanks24]

Hello all,

I was diagnosed last week with Crohn's. I have a fistula that does not seem to want to close on its own, and mild inflammation in the terminal ileum and the left side of my colon.

My doctor told me that I have an agressive phenotype of CD and Remicadee would be the best clinical option. However, I have also battled chronic depression for the majority of my life (currently on ssri's) and would not want Remicadee to affect my emotional stability, which I have heard it does for some people.

That being said, does anyone have experience with fistulizing Crohn's? How effective were alternative treatments (Diet, 6MP etc.)? When did you go on Remicadee and did you experience any change in mood?

My Dr. told me that if I choose to go on Remicade, going off would be very difficult. The inflammation may come back "with a vengenace" as she said.

I just wanted to get some input from other people. This is a very difficult thing to hear at such a young age.

Thanks

 

[kh216]

I have Crohn's Disease but I am not prescribed Remicade. However, I have heard that Remicade is the best medicine for fistulas. I am sorry that you suffer from depression. However, if the Remicade helps your Crohn's symptoms, you might feel better both physically and mentally.

 

[parentnj]

I have also heard and read that Remicade is effective for promoting the healing of fistulas.

 

[Grumbletum]

Hi Moneybanks and glad you have found the forum. Sorry to hear about your diagnosis. It's an awful lot to get your head around, I know.
About your fistula, is it an internal (intestinal) one or is it exiting via your skin i.e. a peri-anal fistula? Remicade does have a good track record with fistulas, although the internal variety are notoriously difficult to heal with medications and often surgery is the most effective treatment for them. This is the first time I've heard mention of Remicade affecting mood, emotions etc. Steroids, for example Prednisone, are usually the worst offenders.
You might find it usual to have a look here at our sub forum. There's lots of info and advice from fellow fistula sufferers that will possibly help you with decisions about your treatment.

 

[my little penguin]

Good luck with your decision my son is only nine and started remicade last year at the age of eight.
It has not affected his mood at all.
In fact since he feels so much better he is a happier kid.
It has given him his life back.
He does not have fistulas but I know a few adults with crohn's and fistula s on remicade that it really helped.

 

[shamrock15]

I have had remicade for 4 years now. I have lived with crohn's for over 20 years before remicade, and I have an aggressive form with many skip lesions, resulting in 6 surgeries of which two were for putting in an ostomy, then reversing it. Since going on remicade, I think I can say that I actually have seen remission for the first time. Pred definitely caused mood/aggression changes in me, something I have never seen in remicade. My surgeon feels that if I had the remicade earlier, it could have prevented possibly three or four of my surgeries (remicade wasn't available for me when I had the first two). If you have health coverage, I would suggest it is very much worth a try.

 

[AlliRuns]

I have fistulising Crohn's. I have been on Remicade since January. No negative effect on mood, in fact, it has been a big mood boost because I am starting to feel much better and able to do the things I love.

 

[moneybanks24]

hey everyone--your responses have been so helpful! I am leaning towards going on remicade, or possibly doing a co-regiment of that and 6 MP and then titrating off the remi.
Thanks again.

 

[System-X]

I have fistulizing Crohns too. I've been on Remicade for almost 2 years without any side effects. Ironically, my immune system seems stronger and more in balance - I haven't had a cold since I started Remicade and my dandruff cleared up. But Remicade was really the only option for me, since my fistula was causing me major and dangerous internal complications.

 

[Lisa]

I've been on for over seven years now.....remicade tremendously helped my fistulas....Will post more tomorrow when I'm on my laptop vs my kindle.

 

[SdN]

I've been on Remicade for just about 2 years now, wow time flies... It took roughly 9 months and an increase in dosage for it to really start working for me but now I'm completely in remission. As a result of the improvement I've experienced my mood has improved drastically while on Remicade. I personally haven't noticed any negative effects on my mood that I can attribute to Remicade.