I have a question

[farm]

I see where people have been on Remicade for years? Doesn't it just become another maintenance med at that point? I've only had 6 or 7 infusions; but I was under the impression from my doc that after a year I'd come off of it. ?

I posted this here as to not scare anyone, but I'm kinda wondering now...

 

[imisspopcorn]

I think it is a long term maintenance med.....Just like Imuran, Pentasa etc....Once you are in remission, I think you can relapse if you go off of it.

 

[farm]

Well I have no choice but to come off of it in June. I was hoping it was the miracle med and I'd be in remission by now? Guess not.

 

[Guest1]

I was wondering the same thing, too, Farmie. I know my friend was on Remi -- not sure how many infusions she did, but she's off of it and in remission (been several years) and hasn't had a relapse.

 

[farm]

See that's what I'm looking for.

 

[Guest1]

Yup. In fact, she told me about remi before I came to the forum and seriously thought it was a magical cure, LOL. I was bummed when I came here and saw how long some people have to stay on it But hopefully you won't have any problems and can stay in remission, yay!

 

[Peaches]

It is considered a maintenance med for me. My doc has to get yearly pre auths from my insurance company to continue taking it and it is considered a medical need. I have been through at least 3 different insurance companies over the 6 years - and none of them have ever argued it otherwise. I think it is pretty clear for me at this point that if I come off of it I will pretty much flare within a month or two.

Farm - is your disease quieting down at all with it? I see where you posted you had a blockage - just wondering if you are getting any relief from it.

 

[Peaches]

Friggin' PG!!

 

[krahsdnal]

I was on it for about 4 years, go every two months. It was a maintenance med for me.

 

[BWS1982]

It was designed as an acute/short term remedy to a flare, for immediate burst treatment, like a single hospital stay is to calm a flare up. Almost the same as IV Levaquin or Solumedrol...Then a study led by Dr. Stephen Hanauer (of the hospital I go to for my GI, who's second behind Hanauer) 8 years ago opened the floodgates for widespread maintenance use, and at this point, that's almost universally how it's used, an ongoing drug like Asacol or Imuran, intended to be infused until either it quits or the risk-benefit ratio is off balance.

I've actually not heard of anyone going off it on a set schedule unless one or both of those two reasons are at play.

More info here: http://www.uchospitals.edu/news/2002/20020502-remi.html

 

[farm]

Thanks for the info everyone.
My GI believes that if the Remicade can't put me into remission within a year of use (along with other meds like Pentasa) then I basically would need to look at further surgery.
I *feel* better being on Remicade; but the symptoms persist.
I had surgery on 12-31-08 and was hopeful it was over for a while, but then in March of 09 a colonoscopy showed "moderate to severe inflammation" still.
Went through Pred, Entocort, Pentasa, etc then started Remicade in June 09.
Started at 5 viles (whatever that is) and am on 10 viles each trip now.

I have some severe narrowing where the stomach empties into the small bowel and thus far in 16 years I have had 3 obstructions there. 2 within the past few months. The barium deal showed that my stomach trys to empty, but it takes around 6 hours to do so. I get a terrible build up of stomach acid, which of course, escapses through puking. This also showed my acid reflux was much worse and they named it GERD at that time.

 

[Peaches]

Your siggie made my brain hurt LOL!!

Did they put you on anything other than the Pentasa as your maintenance drug after the surgery? That is such a different place to get your disease - not sure if I've heard of anyone else getting it there so far. Sounds really painful!! Is that where you had your surgery before - to remove some of that area? Sorry - you have probably mentioned it before, I just can't remember.

Do you feel like your disease is better (the inflammation part of it at least) except for the narrowing issue? I'm just wondering if Remi is controlling all that, but you just have the functional issue going on that might need to be removed to make you feel better. I'd hate for them to take you off the Remi if it was helping with everything else but that.

 

[farm]

No they removed my ascending and transverse colon along with some of the small bowel.
They have never actually said the narrowing at the stomach is Crohns.
The 'active' crohns is above my surgery site in the ilieum/sm. bowel now.

 

[Fog Ducker]

It has been maitenance for me, but took some tweeking to get the dosage and intervals right. you said you are on 10 vials now, how often? I get 8 every 6 weeks. Do you notice it works for a little while then wears off? Or is the same the whole time?

 

[DanSJVDavis]

I was given Remicade when it was first approved for Crohn's and they were saying that you could never use it again once you were given the three IV dose. I went in three times, they pumped one IV bag in over the course of like an hour each time I went in and then I was done. Once they gave me the remicade the doc put me on Pentasa to maintain the remission. It had me feeling pretty good for quite a few years.

It's actually a strange thing for me, due to how Remicade used to be administered, to hear of people being on it for months/years.