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Sine-Curve: Fistuala Treatment with Humira

Hello All,

I also posted this on Fistula Support Group but wanted to consult here as well. I previously was on Remicade and switched to Humira last December (2013).

Just writing to share my experience with my fistula that has been so resilient and unpredictable. How I am responding resembles a sine-curve with ups and downs.

Twice in the last 4 months, the fistula seemed like it was almost healed and then started getting worse again. First, when I started Humira and my Doctor was so excited that he thought I was ready to have my seton removed. The fistula started getting worse again before I could even see the surgeon. After doubling the 6MP dosage to go along with Humira, I started seeing improvement again over a period of two months. My doctor saw me a couple of weeks ago and said that it seemed like the fistula was fully healed. I then scheduled an appointment for 04/22/2014 (tomorrow) with my surgeon to hopefully get the seton removed. Since 1 week, the fistula started getting worse all over again pretty much to the state it was several months ago accompanied by a severe debilitating pain over the weekend.

In addition to the literal pain, this pendulum like hope and distress is bringing me down. Wondering if anyone had such cycles of improvement and deterioration and what the eventual outcome was.

Thanks in advance.
 

theOcean

Moderator
Are you on antibiotics to treat your fistula as well? I haven't experienced irritation or pain with mine in awhile. How are your bowel movements? That's the only other thing I've noticed affecting mine.

I was also previously treating mine with Remicade, and switched to Humira last November. I'm getting my seton out next week because it's been so successful for me.
 
@theOcean: Thanks for responding. No, I am not on antibiotics. My BM's have been regular and I do/did not have any other issues besides the persistent fistula right from the time of a formal diagnosis in Sep,2012.

I am glad that it is working for you and wish you a lasting relief.
 

theOcean

Moderator
I was on antibiotics for about eight months after getting my seton inserted. (Cipro and flagyl.) I've seen people be on antibiotics for not nearly as long, of course, but I'm wondering if being on them might help with the fluctuations you've been having with it?

Glad to hear your BMs are regular. Loose ones really irritate mine, so I was wondering if that may have been a trigger for yours getting worse.

Are you taking sitz baths (with epsom salts)? They really help with inflammation and help promote healing.
 
@theOcean: Will bring it up with my Dr. next time. Yes, I have been taking sitz baths, generally only once a day though.

Also, my Dr. wanted me to put me on a weekly schedule for Humira but my insurance company denied the request saying they have to wait at least 6 months before they can consider a weekly dosage approval. Wonder if that would have helped but again considering the trend, I am less optimistic.
 

theOcean

Moderator
It may have. I've heard other people on the forum talk about how every two weeks wasn't enough for them, and once their dose was adjusted to once a week (like mine) their fistula closed up within days (they had their seton removed already).

It may be worth it to ask for an MRI, in case there's something else aggravating it, another abscess, or signs of infection.
 
What is your dosage of Humira?

I had a similar issue while taking Humira every 14 days. The fistula would almost close and at the ten day point open again. I went to an every ten day dose and it closed and has stay closed for 3 plus years now.

Maybe trying to up your dosing schedule to once a week? There are plenty of us on a weekly schedule.

Good Luck
 
Hi Mike,
Thanks for your response. I am on a 14 day schedule. My doctor wanted to put me on a weekly dosage too but unfortunately my insurance declined the request and wants me to wait at least 6 months before they can approve/consider weekly dosage request.

Increasing the 6MP seemed to compensate for a while before the fistula started to get worse again. I guess I have to play the waiting game and be patient.
 
Damn insurance companies! Yes, you will probably have to wait it out.

Sorry to hear that. How about your doc pushing the issue? Mine did and the insurance company succumbed to his pressure as it was "medically necessary".

Good Luck
 
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