TPMT intermediate and imuran use
- Thread starter tiredalot
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David
Co-Founder
Welcome to the forum! I'm sorry you didn't get a response until now 
By intermediate do you know if that means you're heterozygous? If so, that means that you'll have around 50% of the normal activity and about 1 in 10 people fall into this group. I know there's a few people here in the same boat who will hopefully respond. I unfortunately don't know what it means treatment wise. I think I'll email the company that does these tests to find out. *edit* email sent. I'll report any info I get.
By the way, based upon your username, have you had your vitamin B12 levels tested? Fatigue is a common symptom of deficiency and those with Crohn's Disease are commonly deficient.
By intermediate do you know if that means you're heterozygous? If so, that means that you'll have around 50% of the normal activity and about 1 in 10 people fall into this group. I know there's a few people here in the same boat who will hopefully respond. I unfortunately don't know what it means treatment wise. I think I'll email the company that does these tests to find out. *edit* email sent. I'll report any info I get.
By the way, based upon your username, have you had your vitamin B12 levels tested? Fatigue is a common symptom of deficiency and those with Crohn's Disease are commonly deficient.
xX_LittleMissValentine_Xx
Moderator
I am TPMT deficient and I am still on Azathioprine (Imuran) but I can only take low doses of it. I have been on it basically since diagnosis but I have had problems with it effecting my blood counts, although I don't know if that is to do with TMPT or not.
I think it has been an idea for a while now that we might try something else, but that decision hasn't been made yet.
Hope this helps!
I think it has been an idea for a while now that we might try something else, but that decision hasn't been made yet.
Hope this helps!
David
Co-Founder
What dose of Imuran are you on LMV?
*edit* Saw your sig. Durrr
How did it mess up your blood? And was that at a higher dose that they subsequently reduced? Did they do the TPMT before or after they first gave you Imuran?
*edit* Saw your sig. Durrr
How did it mess up your blood? And was that at a higher dose that they subsequently reduced? Did they do the TPMT before or after they first gave you Imuran?
xX_LittleMissValentine_Xx
Moderator
I was originally put on 100mg a few months after my diagnosis, on this dose I felt sick and lost my appetite a bit, and thats when they tested for TPMT. Then they put me onto 50mg and this was fine. I had my blood tests regularly and I think it was white blood counts that kept going up and down.
Then almost two years ago now (on my 19th birthday!) They said I would have to come off it until my blood test results returned to normal. I think at this point some of the liver results came back not right as well, but I was also having an allergic reaction to another medication so I don't know if that was connected.
I then had blood tests every week for 7 weeks until they returned to normal and they put me back onto 10mg of Aza. (I cant remember how often my blood tests were at this point but they were carefully monitored) The dose has since then been very slowly increased by 10mg at a time!
I think I have been on 40mg since around August time? I am supposed to have my blood tests every two weeks but It doesn't always work out that way!
I don't think they are planning to get it up to 50mg again, I assume they think that this will be too much.
I think its all a bit stupid to be honest! I think they are just putting off trying a new drug but as in the last week I have had an abscess drained and they have found fistulas I'm guessing we will have to find something else soon!
Then almost two years ago now (on my 19th birthday!) They said I would have to come off it until my blood test results returned to normal. I think at this point some of the liver results came back not right as well, but I was also having an allergic reaction to another medication so I don't know if that was connected.
I then had blood tests every week for 7 weeks until they returned to normal and they put me back onto 10mg of Aza. (I cant remember how often my blood tests were at this point but they were carefully monitored) The dose has since then been very slowly increased by 10mg at a time!
I think I have been on 40mg since around August time? I am supposed to have my blood tests every two weeks but It doesn't always work out that way!
I don't think they are planning to get it up to 50mg again, I assume they think that this will be too much.
I think its all a bit stupid to be honest! I think they are just putting off trying a new drug but as in the last week I have had an abscess drained and they have found fistulas I'm guessing we will have to find something else soon!
David
Co-Founder
The company I emailed got back to me and were absolutely useless.
However, I did some research and intermediate correlates with heterozygous in that you have an intermediate amount of TPMT enzyme because you have one normal and one gene that produces insufficient TPMT (thus heterozygous). Such people are usually given a LOWER dose of the thiopurine. One study had six patients that were heterozygous and five developed leukopenia (a decrease in white blood cells) and the 6th dropped out. So that's something to watch very carefully (you should have regular blood tests while on thiopurines).
Interestingly enough, taking a thiopurine throws off the TPMT testing so it needs to be done before it's taken (and of course to determine all the other variables).
However, I did some research and intermediate correlates with heterozygous in that you have an intermediate amount of TPMT enzyme because you have one normal and one gene that produces insufficient TPMT (thus heterozygous). Such people are usually given a LOWER dose of the thiopurine. One study had six patients that were heterozygous and five developed leukopenia (a decrease in white blood cells) and the 6th dropped out. So that's something to watch very carefully (you should have regular blood tests while on thiopurines).
Interestingly enough, taking a thiopurine throws off the TPMT testing so it needs to be done before it's taken (and of course to determine all the other variables).
