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How do you know if 6mp is working?

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Ulcerative Colitis
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Posted 7/11/2014 10:56 PM (GMT 0)
I've had 6mp for 3 years now and I still flare up once a year. 6mp has caused me to develop ichthyosis vulgaris (scaly skin disease) ever since I started taking it. That, in combination with the fact it doesn't seem to stop my annual flares (had to resort to white cell apheresis last time to get my flare under control) makes me question whether the drug is actually working for my UC or not? I don't want to be on an immunosuppressant if it's not doing its job.
Posted 7/12/2014 12:15 AM (GMT 0)
What was your condition like before 6mp? I personally hate the stronger drugs but, to be fair, getting an annual flare may sometimes happen no matter what you do. Don't jump ship yet. What's white cell apheresis?
Posted 7/12/2014 12:52 AM (GMT 0)
how can you personally hate something you've never tried gar ?
Posted 7/12/2014 1:51 AM (GMT 0)
If you are flaring annually then your uc maintenance medications aren't enough. Either you need a stronger dosage of 6mp, or its time to think about biologics (remicade, etc.).

What's your current 6mp dosage and body weight (it's dosed on weight)? For example I'm 64kgs and take 75mgs daily so my dosage is 1.17mgs per kg. Dosage is usually between 0.50 to 1.5mgs per kg.
Posted 7/12/2014 6:52 AM (GMT 0)
I had remicade three years ago before it stopped working, and have also been on pred multiple times (although thankfully not in the last year and planning to keep it that way!). My dosage of 6mp is 75mgs and I'm 62kgs.

White cell apheresis is a treatment where your blood is filtered and white blood cells are taken out of it before the blood is then put back into your body. I managed to snag a place on a clinical trial here in England for it and it COMPLETELY put me in remission. Unfortunately it's not on the NHS (although some great doctors are trying hard to accomplish this) and if you want it privately it costs £2,000 a session or £20,000 in total. It is used in Japan as standard to treat IBD.

It's a shame that biologics which are harmful are on the NHS yet a treatment that doesn't pump you full of drugs but instead filters your blood and puts you in remission isn't (big pharma...).

iPoop, have you noticed any weird skin conditions since being on 6mp?
Posted 7/12/2014 12:50 PM (GMT 0)
No weird skin conditions. I've had a few annoyances due to a surpressed immune system: trush, plantar warts, and a cold sore that are very stubborn and took a while to get rid of.
Posted 7/12/2014 2:38 PM (GMT 0)
While I was on Imuran (similar to 6mp) I develop some skin problems. Anything that touched my skin with pressure for longer than a couple seconds left a huge red mark, usually itchy. As well as some scaley skin on the top of my hands.
Posted 7/12/2014 8:14 PM (GMT 0)
Thanks Cavalier9, I knew I couldn't be the only one to have my skin react to 6mp. I may ask my doctor to put me on azathioprine instead (I know it's converted to 6mp in the body but it might not meet up my skin like 6mp).
Posted 7/13/2014 1:37 PM (GMT 0)

gavin92 said...
Thanks Cavalier9, I knew I couldn't be the only one to have my skin react to 6mp. I may ask my doctor to put me on azathioprine instead (I know it's converted to 6mp in the body but it might not meet up my skin like 6mp).

You're definitely not the only one. Good luck if you end up switching to aza. Worth nothing that I still have many of the same skin issues after coming off of Imuran, maybe takes more time, I've only been off for about 3 months.
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