Remicade... last resort?

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New Member

Date Joined May 2010
Total Posts : 5
   Posted 5/18/2010 6:19 PM (GMT -7)   
I've been on prednisone for about 3 weeks now, I'm at the point where I am slowly tapering down (Was taking 5 pills, I'm taking 4 pills now, moving to 3 in about 5 days)

The plan was originally to taper down the prednisone and move to pantasa, but the latest CT scan is showing that my fistula/abscess is not going away. So my GI says "how are we going to make this thing close", and tells me that he wants to move me to Remicade.

Now, I trust my doctor to choose the right medication for me, but I have read in many places that Remicade is usually a last-resort before surgery. Maybe this is the time for me to move to Remicade, but I'm just wondering if there alternative medicines I should discuss the possibility of trying with my doctor before I go forward with getting Remicade infusions.

I'm pretty confident the Remicade will work, but I just don't like getting started on it so early (I just turned 21). Who knows when it will stop working, or when they will decide to take me off of it (once you go off of it, you can't go back, right? I feel like I'm going to have a 20x worse fistula in 10 years but I will have already used up my one shot at Remicade).

When you get on Remicade and it is working - at what point do they usually take you off of it, or do some people stay on it forever? Is it the kind of thing where you want to stay on it as long as you can until it stops working or you start having really nasty side effects?

I have a lot of literature that they gave me about the drug that I've been reading, but I know some of you have first hand experience so I definitely want to read what you have to say. Thank you!
Dx w/ Crohn's April 2010

Current Meds: Prednisone (weening off soon to pentasa)
Current Supplements: 2000 IU D3, Fish Oil

Post Edited (slpshtmike) : 5/18/2010 7:23:02 PM (GMT-6)

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 5/18/2010 9:30 PM (GMT -7)   
Remicade was the first drug I was put on when diagnosed and it was a miracle drug for me. I guess I was 24 when I was diagnosed and put on it. At that time, it really was the "big guns" drug but since then Humira and Cimzia came out, there are more options in addition to Remicade.

I was on Remicade for 2 years; built antibodies and it stopped working. Moved to Humira for 2 years. Built antibodies to it and it stopped working. By the time I moved to Cimzia, I had too much scar tissue for it to do much good so I had to have surgery but Cimzia is an option for me in the future - and new drugs are coming out all the time.

Remicade healed my fistulas at the time - worked great. I had no side effects, no issues, loved loved loved that drug.

Veteran Member

Date Joined May 2009
Total Posts : 703
   Posted 5/18/2010 9:38 PM (GMT -7)   
REmicade isn't the last resort -- there are several other biologics. In fact, I'd prefer the others over Remicade because they're simple shots rather than 2-3 hour infusions.
Cimzia, Asacol

Regular Member

Date Joined Apr 2010
Total Posts : 29
   Posted 5/18/2010 9:44 PM (GMT -7)   
Aimee, what kind of surgery did you have? slpsht mike, I was in the same position as you, I started with pred and pentasa but the doc said my 2nd CT scan showed more extensive inflammation than gthe 1st one at the time of diagnosis so he wanteds to start me on Remicade. During the time it took to get my insurance papers for Remicade sorted (1 month) I did quite a lot of research and spoke to 3 or 4 doctors and told them about alternative methods that I had researched but they were all in the view that even tho things like diets and alternative practices can take away your symptoms, they will in no way actually reverse my inflammation where as remicade can do that. I had my first Remicade infusion 2 days ago, I was quite worried, it went well though and I didnt have any allergic reactions or short term side effects at least but I am still quite worried due to Remicade's long list of possible side effects and I am still trying to figoure out more about alternative medication ans what might work for me. Its just hard to try and convince my GI to believe in those kinds of methods, he is the head of Gastroenterology at a very prestigious hospital so I don't want to feel as if I am not respecting his knowledge but I do try to discuss some alterntive medication stuff with him, he just seems to be in the view tho that I can try it if I want but I should continue with conventional medication too, so for the time being I guess I am going to stick with my Remicade and Imuran.
21 year old male, Diagnosed with Crohn's in Feb 2010. Previous Meds: Prednisone, Pentasa. Meds did not work apparently and inflammation became more extensive so I had to start on the current meds. Current Meds: Remicade (done 1 infusion) and Azathioprine 125 mg. Have been symptom free for 2 months even before the Remicade and Azathioprine. Trying to eat natural foods, avoiding red meat, dairy, spicy, fried foods and refined sugar. Interested in trying to figure out if there is a way to get off medicines and achieve/maintain remission with diet.

Veteran Member

Date Joined Sep 2006
Total Posts : 845
   Posted 5/18/2010 11:32 PM (GMT -7)   
It sounds like a lot of the information that you have read on Remicade is a little outdated. In the past it was thought that Remicade was a last resort med but now it is one of the most commonly used meds for this and other diseases. For many of us it was really the first medication that gave us any relief. It was also thought of in the past that once you stop you can not go back on it due to buildup of antibodies, but I am living proof that you can go back on it and still see positive results. Your situation is probably one of the most ideal for Remicade use due to the fact that you have a fistula. Remicade is known as being the one of the most effective at healing fistulas and treating fistulizing crohn's. There are other tnf inhibitors such as humira and cimza and others still in the beta phases. Many people put off medications because of the same worry that you have about not having it later down the road but you need to remember that you actually need it now.

Regular Member

Date Joined Feb 2007
Total Posts : 430
   Posted 5/19/2010 1:44 PM (GMT -7)   
Had my first surgery at 25, it put me into remission for over 12 years. Many others on the site have had equally impressive outcomes so don't be so afraid of surgery - just make sure your surgeon has a lot of experience with crohns.

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 5/19/2010 8:31 PM (GMT -7)   
dawinner - mine was a double resection - it included some fistula clean up. It was a big mess evidently. No drug could have solved the issues I had going on by that point.

Regular Member

Date Joined Mar 2010
Total Posts : 49
   Posted 5/21/2010 7:33 PM (GMT -7)   
Remicade can be a pretty good drug, you just have to be very cognizant of how you are feeling. Have you looked into Methotrexate or imuran?
Diagnosed at 17, currently 23 :)  Have had 1 resection so far.  It's been an adventure!
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