A question or two

[emmaaaargh]

I've been on Azathioprine for coming up to two months now. I don't feel spectacular, but I don't in any way feel as bad as I did before my stint on steroids. Could this be because my dosage isn't high enough? My doctors put me on 35mg to start with and I've been there all this time. Apparently, it's my weight, and to go any higher I need to put on more weight. I weigh about 35-39kgs, so if it was 1mg/kg I could understand.

Anyway, what I'm asking is this: is Azathioprine actually effective at this sort of dose? I've seen people start at 25mg but they always seem to move up to 50 and I... feel like an outsider haha!

Also, another thing is I'm sort of annoyed at my doctor for being vague about blood tests. If I didn't know all I did about this disease I wouldn't know about the need for regular blood tests! I've had exactly ONE since I've started the treatment and he hasn't sent us any more phlebotomy forms/replied to our messages. Should we just go up to the hospital to demand a form? I've been on edge about this for about a month. Doing some reading I've noticed it's not uncommon for doctors in the UK to be a bit lax about this! :/

Thanks if you read all that! I know I'm a little bit (okay, a LOT) on the long-winded side.

 

[stayincalm]

Hi -my daughter who is 12 started on 25mg and then doubled to 50mg (she weighs about 38kg ). The consultant wanted to see her in 5 weeks for a blood test but today my gp said we shouldn't wait that long and will do one in 2 weeks. We doubled the dose a week ago. I'm afraid I don't know anything about how effective it is. Could you phone the consultants secretary to get a message to the consultant or go and see your gp. When you say doctor not sure if you mean hospital doc or gp!

 

[emmaaaargh]

Thanks stayincalm! It's my hospital doctor but I think I might go to my GP since she's really nice and obviously easier to get appointments with.

 

[niroowns]

I think that's a real low dose!!! Are you sure you are not on 6-MP instead of Imuran (Aza)? Usually Imuran is dosed 1.5-2.5 mg/kg. Most doctors here in the states hope to get patients in the 2-2.5mg/kg range and then possibly do some testing to see if their blood is in the therapeutic range.

 

[emmaaaargh]

I'm absolutely certain I'm not on 6-MP! My gastro sent me a copy of a letter he sent my GP and he definitely said Aza and not 6-MP. The prescription also reads Aza.

 

[niroowns]

There is a test here which is called the Metabolites Test which measures the drug levels in your blood. Usually you can do this test after being on AZA for 3-4 weeks. I am not sure if it's available in the UK - it is here in the US, but only some insurance carriers cover the cost of it. You can ask your DR about it? It's called "PROMETHEUS® Thiopurine Metabolites".

Here is a link (see under right side of PDF Optimize section) - http://www.prometheuslabs.com/Resources/TPMT/PTM_CVA.pdf

 

[xSophiexx]

Hi emaaaargh my GI doc worked it out for me at 2mg per kg of my weight but started me off on 25mg for couple weeks to see if allergic .. then put it straight up to 150mg wich made me sick as a dog so had a week off then put on 50mg lol weird and confusing. i will mention that the gi said 25mg was literally like taking nothing its just enough for your body to show if allergic if that makes sense?! your dosage sounds a bit low maybe call your gi / ibd nurse and see what they say? but bear in mind its meant to take a few months to start working.

 

[xSophiexx]

Oh and about the blood tests i had them weekly for five weeks and now every 2 weeks. its REALLY important to be having regular blood tests because of the nasty side effects to do with liver function i think so get on your gi!!

 

[Catherine]

My daughter is now on 100mg she is 56kg. She started on 50mg at dx, at that time she weigh 44kgs.