Remicade and Fistula

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Domesticated_Primate

Domesticated_Primate

Joined
Oct 18, 2014
Messages
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Anyone here have a fistula before starting Remicade? If so, how'd it go?


I had a PA abscess cut and drained before starting my first Remi treatment about a week ago. I am now abscess free, but still draining from the suspected fistula. I go in for my second treatment in a few days. Really hoping for a miracle and this thing stops draining.
 
I start my first Remi treatment next week! I have not had an abscess but I do have a draining fistula as well. I had one about two years ago that was draining and started Cimzia which was great and closed the fistula up until a few months ago. How did your first treatment go?
 
I had my first Remicade infusion this past Friday with draining perianal fistulas. Hoping the Remicade will close the fistulas.
 
Sharkgirl said:
I start my first Remi treatment next week! I have not had an abscess but I do have a draining fistula as well. I had one about two years ago that was draining and started Cimzia which was great and closed the fistula up until a few months ago. How did your first treatment go?
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I slept through most my first treatment because I had worked 3rd shift the night before. I had no adverse side effects. The day after my first infusion, I took a very healthy poo which made me pretty happy. I'm not sure if it was the Remi working that quick or just luck with something I ate, but either way I was happy.

I am currently hooked up to the IV getting my second treatment. Again, no adverse side effects yet. Knock on wood.

The clinic I go to has wifi so I brought my laptop, but I'd recommend bringing something to read or do as you'll be there for a few hours.



And best of luck to you Jay, hoping we can both share success stories in a couple more treatments. I'm ready to put this whole fistula thing behind me. (Unintentional pun)
 
@DomesticatedPrimate. Are you on any additional medication with the Remicade? Do you receive hydrocortisone via infusion prior to the Remicade Infusion?
 
Hi,

I have been on Remi for over a year now, I have never had fistula so I can't offer any information on that. However I did want to say that the Remi has work extremely well for me with little side effect. Hopefully it will work just as well for you.

Good luck
DB
 
SilentSuffer said:
Hi,

I have been on Remi for over a year now, I have never had fistula so I can't offer any information on that. However I did want to say that the Remi has work extremely well for me with little side effect. Hopefully it will work just as well for you.

Good luck
DB
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Are you using Remicade as a mono therapy? I've been Rx Methotrexate as well in conjunction with the Remicade. I would prefer to just continue with the Remicade as a single therapy. I'm uncertain about continuing with both drugs...
 
I am only on Remicade at the moment. My specialist wanted me to go on Imuran to deal with some joint pain I was having, I told him that I rather not be on any other drugs if I could avoid it.

My Remicade doses have just been increased to every 6 weeks form every 8 weeks, they are hopping that this might help with the aches and pains.
 
I went on Remicade because I had six fistulas. Or more. They started healing from the first treatment. They're all gone. It's in the fistula success stories. I'm also on Imuran.
 
@ Jay, I am currently weening myself off of Prednisone. I started out on an IV of it for two weeks while in the hospital and 40mg/daily since day of discharge. I am currently taking 20mg/daily, taking 5mg less every week. I currently take no other medications other than OTC vitamins/probiotics. To the best of my knowledge (I haven't specifically clarified), along with the Remicade I take tylenol/benadryl orally and just a standard saline drip.

Tuff, I am happy to hear that the treatments helped with the fistulas. Certainly gives me hope moving forward.
 
It has been almost 3 months since I've started Remicade and I have had 3 infusions. There has been no change to the fistula, but I am without any other typical Crohn's symptoms. The two biggest side effects I have noticed so far are acne and lower back pain. Still hoping this stuff will work and cure the fistula.
 
Good luck! Generally biologics really help - I know Humira did wonders for my fistula, and stopped all drainage. I found Remicade wasn't as effective, but was also allergic to it, which was probably why.

You could ask your GI about Imuran or Mercaptopurine on top of the Remicade, since they also can help with fistulas.
 
Domesticated_Primate said:
It has been almost 3 months since I've started Remicade and I have had 3 infusions. There has been no change to the fistula, but I am without any other typical Crohn's symptoms. The two biggest side effects I have noticed so far are acne and lower back pain. Still hoping this stuff will work and cure the fistula.
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Please keep us updated on the progress of the Remicade. Perhaps the Remicade healing time for fistulas may also have some variance for some of us. Let us know how you are after Infusion #4.
 
4th infusion today. I feel no different today that I did before my first infusion. Fistula still the same, if not bigger. I have noticed I am losing a bit of hair, my body (back especially) is much more sore, and I have more acne now than I ever have. This crap is also expensive as hell. Trying to stay positive, but I'm not seeing any benefit yet.
 
Crohns with draining fistula, seton in place. I'm getting paperwork in place for remicade. I'm undecided, still investigating options to heal the fistula and try drastic diet changes to limit the crohns. Any input is appreciated from those with fistulas. Can I get rid of this without biologicals? I'll update as my remicade approval gets closer.
 
indyjps said:
Crohns with draining fistula, seton in place. I'm getting paperwork in place for remicade. I'm undecided, still investigating options to heal the fistula and try drastic diet changes to limit the crohns. Any input is appreciated from those with fistulas. Can I get rid of this without biologicals? I'll update as my remicade approval gets closer.
Click to expand...

I also went through your exact thought process. Hesitating for two years & relied on surgical intervention & a major modification in diet....Finally, decided on Remicade. Just finished Infusion #4 & fistula drainage appears to be showing a signicant improvement.
 
indyjps said:
Crohns with draining fistula, seton in place. I'm getting paperwork in place for remicade. I'm undecided, still investigating options to heal the fistula and try drastic diet changes to limit the crohns. Any input is appreciated from those with fistulas. Can I get rid of this without biologicals? I'll update as my remicade approval gets closer.
Click to expand...

Within less than a month of being on Humira, all drainage stopped for my fistula. There's a very low chance of fistulas ever healing, and biologics (and sometimes with the addition of Mercaptopurine or Imuran) help increase those chances.

So, you can try, but I personally go the biologic route.
 
Thanks all for the advice. Not trying to hijack domesticated_primate's thread, but I think mt situation is relevant to his original question.

I did get approved for remicade and did a lot of reading and all advice says the fistula won't heal without remicade/humira. I'll be scheduling my first remicade treatment and will report back on what happens with the fistula. Time to go read up on what to expect with first treatment.
 
Domesticated_Primate said:
4th infusion today. I feel no different today that I did before my first infusion. Fistula still the same, if not bigger. I have noticed I am losing a bit of hair, my body (back especially) is much more sore, and I have more acne now than I ever have. This crap is also expensive as hell. Trying to stay positive, but I'm not seeing any benefit yet.
Click to expand...

I just finished Remicade #6. The two fistulas with setons have just been removed & for now, remain dormant. The external tunnel opening seemed to close within less than a few days. They did not start to show marked, signs of slowing drainage until somewhere between Infusion#5 & #6. One actually required an ER visit to have the tunnel roof partially removed with what appeared to me to be a sudden plug of unexpected drainage that expelled sometime after Infusion#5 but wouldn't release from the tract. causing what I thought might be another abscess...It wasn't...However,the remaining fistula without a seton remains in a continuous cycle of 3-4 day fill & spontaneously burst & drain. Very sore, tender & painful. This fistulas seton had severed shortly after it's placement. Has anyone had a fistula heal without a seton on Remicade? What kind of time frame wrt Infusion#?
 
My son had a peri-anal fistula with a seton that healed completely, almost immediately after he started on Imuran.

Unfortunately, Imuran is no longer therapeutic (it worked for about 2 yrs) and his inflammation is now progressing to the point that we're have no other option and he will start on Remicade as soon as the insurance clears it.

In case it helps, our GI @ Rush in Chicago said Remicade is really the best option for fistulizing Crohns. Also, my son will be on dual therapy Remicade and Imuran because of the severity of the inflammation, his history of fistulas, and the fact that Imuran can stop the body from creating antibodies to Remicade (since it is not human).

I'm hoping for a positive outcome - really hope you guys have success with it too.
 
My husband started on Remicade last week. He has 2 fistulas, both with setons. We can now see visible effects to both his Crohn's symptoms and his fistulas. We can actually see the healing process and its only been a week. I hope it continues and he is in remission soon. Hope you all feel better soon.
 

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