Crohn's disease, Infliximab & fistulas - anyone?

[WestYorkshirePudding]

I won't go into the ins and outs of it all as it won't be a lot of interest to most people. However if there's someone out there who has experience of Crohn's / Infliximab / Fistulas then can you reply and I can ask you something?

Cheers!

My DH might be able to help you.

Well I've had Crohn's for 4 years now and after an awful start, have managed it well. I was on Infliximab for 18 months to close a fistula that I got after having two abcessess in the space of 3 weeks. The fistula closed after only a few sessions but I was kept on it which was fine by me. Obviously because of cost issues with this drug they took me off it in August after overlapping for 3 months with Azathioprine and now I just take 3 tablets of Azathioprine daily.

However in the past 6 weeks I've been so much more tired than usual, my skin is dry and itchy (a symptom of Crohn's) and in the past week I've noticed that the fistula seems to be opening again slightly.

I just wondered if anyone could tell me if this is quite likely to happen as if so I probably need to try and get back on the Infliximab but I'm not sure my consultant will want to push that due to the cost.

And sorry for the essay!

Hi WestYorkshirePudding. This is what DH said:

If your fistula has opened again despite being on a reasonable dose of azathioprine (and it sounds like you are on 150mg a day), then there is a very good argument to get you back on infliximab or a similar medication before things deteriorate further. Epecially given your difficult experiences arond the time of diagnosis. Many centres are now moving from infliximab to adalimumab (brand name Humira). Humira is taken by the patient at home once a fortnight. Because it doesn't require a hospital bed to administer, the overall cost is reduced. As you have penetrating Crohn's disease, recurring on azathioprine, you should push your consultant or the IBD nurse at your hospital for a change in your medication.

He also suggested you see your GP to see if you should be on antibiotics for the fistula whole you're waiting to be seen at the hospital.

HTH

while, not whole

Thanks so much bagelmonkey :)

I'm seeing the urse for blood tests on Thursday so will ask her to dig out the contact no. for my consultant as I'm sure I'm due a review anyway to see how I'm getting on with just the azathioprine but as yet no appt. has been made.

Can I ask, does your DH suffer with Crohns or is he a specialist in this field?