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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » When Remicade, Humira and Cimzia ALL don't work for Fistulas



06-25-2012, 09:59 AM   #1
CrohnsNYC
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When Remicade, Humira and Cimzia ALL don't work for Fistulas

Hi all - It's been a while since I posted, which I suppose is good because I have been feeling ok up until very recently. I have struggled with peri-annal fistuals since I was diagnosed with Crohns three years ago. I was on remicade and it worked on closing them, until it stopped working. The same with Humira -- worked, then stopped working. I have been on Cimzia for five months now and I don't think it is working. Not only have my fistuals not closed at all, I have a new one that is tracking to the same place my other two are and I feel an abscess coming on. I am wondering, are there other people who have tried and failed with all three of these drugs? And if so, what are you on now? I'm worried that my options have run out. I am booked to see my GI doctor and surgeon later in the week, but I would like to go into our conversation informed with what options might be on the table.

Many thanks!!!

Beth
06-25-2012, 11:19 AM   #2
PsychoJane
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Hello Beth,
My situation is different from yours as far as the location and the meds used. I was having peristomal fistulas. At first, humira did a great job at keeping them close, well, keeping the one I had closed until others started forming (humira was then not only not preventing them anymore, but not healing them either). My GI did not even consider trying another anti-TNF as it is typical that if you fail with one anti-TNF usually the same will happens with any other at some point in time. What he considered doing was to add an immunosupressant with it (methotrexate in my case) to diminish the antibodies response to anti-tnf and allow it to work again. That was used with antibiotherapy to allow better response. I did not respond to that more so I decided to go for surgery as it seemed like a much better option since it's the only long term treatment option for fistula.
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06-25-2012, 11:30 AM   #3
muppet
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Have you been on anything except anti-TNF/biologicals? How about 5-ASA drugs? Have you tried Rowasa or Canasa? Are you doing anything to moderate your diet? Have you seen another GI for a fresh perspective on your treatment?

Sorry for the question barrage, but I'm trying to get a picture here. It sounds like your disease isn't very well managed on the meds you've been using. What does your GI have to say about that? If you are actively fistulizing, your drug regimen has failed or is failing. You need to supplement it with something else whether that's more meds, dietary changes, both...
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06-25-2012, 01:02 PM   #4
CrohnsNYC
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I was on methotrexate for a while, but when I started the Cimzia she took me off. There were reasons given, but I can't remember. I have not be on the 5-ASA drugs, but for some reason I didn't think they worked at closing periannal fistuals, but I couldn't be wrong. As far as diet, my bowels for now are fine, so I really haven't thought about it. Can diet help close them? If yes, then I definitely would do that!

I've felt very confident in my doctors, although frustrated at the moment. I see GIs at the IBD center in NYC and they are on the cutting edge of research and treatement. All that said, a second opinion may not be a bad idea at this point. I have a very rare case and symptoms, including Metastatic Crohns which is crohns that minifests itself outside of the stomach and on the skin. It was very hard to diagnose, and very difficult to treat. Anti-TNF are the only known treatement for this. There are only several known cases similar to mine in the world. I also have a history of sever alergic reactions to some drugs.

It all seems like a perfect storm of bad circumstances. I would love some more thoughts/advise/anything.

Thank you!
06-25-2012, 01:04 PM   #5
muppet
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if you're actively developing new fistulae, it's pretty unlikely that your bowels are fine. That does not compute. It sounds like your drugs are not working.
06-25-2012, 01:34 PM   #6
Keepingfaith
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Hello!

I am in the same situation as you. I'm on Cimzia(just started a few weeks ago) and have tried Remicade, Humira, Asacol, Apriso, canasa suppositories, steroid suppositories, sulfasalazine etc. etc. Your GI seems like he's doing the right thing. My GI doesn't even want to consider things like methotrexate because my case is to severe but if Cimzia doesn't work, I'm going to plead with him about it. I've gotten a second & third opinion & all three GI's are in agreement: Once you've failed all the biologics, there is no use in trying an immunosupressant like Methotrexate. So, I don't think immunomodulators are your answer.

I think it is time to consider surgery, especially if antibiotics & the biologics aren't helping. You developing more fistulas is a sign that your disease is not under control.

I hope you can get your disease under control through medication, surgery diet etc. I know it's hard now to make these kind of descisions. Maybe getting another opinion will lead you into the right direction.

I wish you the best in your medication desciscion!
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06-25-2012, 02:13 PM   #7
CrohnsNYC
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Thanks Keepingfaith! Sometimes it helps to just know your not the only one. I'm sorry you have struggled with this too! It really does suck.

At the risk of sounding totally uniformed and uneducated, what type of surgery are options? I have two setons currently in place (which have been there for over a year). The new fistual seems to be tracking to the same place. Is there something more drastic that helps with the fistulas.

And yes, you and muppet are totally right. Getting a new fistula is definitely a sign that it is not under control. I am in denial!
06-25-2012, 02:50 PM   #8
Keepingfaith
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I honestly don't know any other surgery options for you other than a resection(depending on where your fistulas are), fistulotomy & a flap surgery.

I have been lucky to avoid surgery since DX(other than a GB surgery) so I am hoping it stays that way! I'm putting a lot of faith in Cimzia.

Does your GI think that going in a clinical trial would help?
06-25-2012, 05:02 PM   #9
Sailorluna
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Hi Beth,
My GI has me on azathioprene and humira both. He told me that they work better together. Not sure why.

There is another surgical option. My surgeon has mentioned a stoma a couple times. Right now we are talking about changing meds to remicade but if that doesn't get it healing I think we will be talking about a temporary stoma. I believe the idea is that if there is no rectal output it will heal.

I don't mean to scare you but it is something they may bring up.

-Barbara
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Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

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Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
06-26-2012, 06:42 PM   #10
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I am also in a similar boat... I've been on remicade for over 2 years now and my fistula (horseshoe so it's high up and complex) won't close up. In recent months my doctors have increased my remicade level to 10 mg and frequency to every 4 weeks and they've also added imuran. I don't have as much discomfort now that I get infusions every 4 weeks but my doctors are starting to feel that the next step should be a stoma. They feel that remicade is the best for fistula closure and given the size of my fistula they think surgery has better chances of success than trying another medication.

I already have 3 setons in to help with drainage (these have been in for almost 3 years) and given the placement of my fistula (high up), surgical options like fistulotomy are not options. I met with 2 Colorectal surgeons who said the plug has very low success rate. At this point I think we'll give the medications a little more time (and we are moving so I don't want to have a major surgery until we're settled) but if in a few months things are the same I will likely try a stoma. My GI told me he has patients who this has worked with so I will pray that it works for me if I have to go that route. Good luck and please provide updates/
06-26-2012, 11:22 PM   #11
oaktree
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dgg, I hope that your new medications help! I'm new to the boards, so please forgive my ignorance about these medications. My fiance was recently diagnosed with Crohn's. He was on Humira, but it has caused optic neuritis, so his doctor is thinking we should try Imuran.

He's had a fistula for over a year, and we were really hoping that the Humira would help it heal. From the sound of many of your posts, it sounds like the fistulas...don't heal? Is that true? Has anyone has success with Imuran healing a fistula?
06-27-2012, 03:09 AM   #12
PsychoJane
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Well, medication will generally help to allow a "temporary" healing if I may say. If a fistula respond well to a treatment (antibiotics/anti-tnf/immunosuppressants - sometimes TPN), it will "close". The inflammation of the tract will be diminished and it will stop draining (passing air, mucus, pus or stool). You can even have some skin growth on top of the fistula when it is not "active". The thing is that the fistula tract itself will never disappear and it is likely to "reactivate" once the treatment is discontinued or that the body stop responding to the drug. The only way to really get rid of them is therefore to surgically remove them.
06-27-2012, 04:48 AM   #13
Slim Johnson
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I haven't had Remicade, as I figured it wouldn't work for me. I have been on Humira, and Cimzia, without any long term success. In fact, the Cimzia failed altogether.

I had also been on Asocol, Pentasa, Imuran, Entocort, Prednisone, Cipro (the antibiotic), flagyl, and a few other drugs I can't remember right now... at one point or another. Some of the drugs in combination. All without any remission.

I ended up having surgery in March, to remove parts of my intestine.

Now, I am on Low Dose Naltrexone. It is working to some extent, however I still feel like I am having some symptoms.

I feel like I am in the same boat as you, in the sense that no matter the drug, the symptoms always return.

Good luck finding something.
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09-01-2013, 03:53 PM   #14
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The first dose started to work and my fistula seemed to close... third dose caused a weird rash on my sides and now I am flaring again... oh, and the fistula opened back up. Mesalamine helped too but my Primary Care Doctor for the VA wouldn't renew my script that my private GI had given me. I can't afford to keep going to a private GI and the VA is giving me a run around. I want to try Naltrexone... I don't want any more shots or needles anymore. Either that, or do the surgery to correct it.
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