Posted 10/8/2017 9:24 PM (GMT 0)
hmmm
I would say you need to up your dose or add another immunosuppressant like 6mp to the mix.
The Humira isn't doing enough and it may even be making things worse. It's rare, but there's a woman on here called U B Tough who went on Humira and then had tons of abscess and fistula problems.
When I was first considering what drugs to go on to treat my perianal fistula in 2010, my GI said that there wasn't much evidence out there saying that Humira was useful in treating fistulas, so she prescribed me Remicade. What an amazing drug! Within two months, my fistula had stopped draining and it stayed that way for 6 months. It reopened and started draining again, but in 7 years, it never reabscessed and it never allowed my fistula to create secondary tracts. I recently switched to Entyvio, which really does nothing for fistulas, and then had my first seton surgery in August for this 8 year old fistula, and I had the FLAP done on Monday. At the time of the FLAP, I had only had my seton in 6 weeks, but the drainage had definitely decreased from heavy to barely there during that time. The wound had also become significantly smaller, but still there, say from 2 inches to dime size.
I don't know if I'm a typical case or rare, but it doesn't seem right to have such a heavy amount of drainage over 10 months. It sounds to me like your disease is pretty severe and Humira isn't doing enough work to help you and could be making you worse. I'm glad I never went on it. One of my long term friends from grad school had a reaction to Remicade and then tried Humira. He then lost all the hair on his body at the ripe old age of 22. It was a very rare outcome, but it reaffirmed that I had made the right decision 7 years ago.
Feel free to post here anytime!