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questions about 6mp

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Posted 5/30/2012 11:29 PM (GMT 0)
The PA at my GI's office wrote me a prescription for 6mp today. I have never taken it before as I have been trying to avoid it. She just told me that I would need to have a CBC and liver enzymes checked in 2 weeks after starting the medication. I thought you had to have lab work done prior to starting the medication? Am I wrong? I asked her about it so she finally ordered a CBC and CMP to be drawn prior to me starting the medication. At first she told me she was going to put me on Imuran and then I asked her how do you know if I need Imuran or 6mp. She then told me that she would start me off on 6mp instead. I guess I just felt like she wasn't very familiar with the drug and I would like to know if there's anything I need to know about this medication before I start taking it. She started me off at 50mg. I will pick up the prescription tomorrow. Is it okay to drink alcohol while on it? I have a friend's birthday celebration next week and was hoping to have a few drinks. How often will I need lab work done, etc?
Posted 5/31/2012 12:12 AM (GMT 0)
Alcohol is fine.

Before going on immunosuppressants, they should do a TPMT test (http://labtestsonline.org/understanding/analytes/tpmt/tab/test). It would also be prudent to make sure you are up to date on all vaccinations, including pneumonia, chicken pox (if you've never had it), hepatitis, mumps, measles, rubella, tetanus, diphtheria, influenza, etc.

My dr wanted me to get labs done every 2 weeks for 2 months, then every 6 weeks for 3 months, then every 3 months after that.

It's a pretty safe drug but if you don't feel comfortable with the information you were given, call the office and have a nurse clarify. Nurses generally know this stuff backwards and forwards so if something doesn't sound right, they can check on it for you.

If you don't trust the PA, make sure you see someone else next time.
Posted 5/31/2012 12:31 AM (GMT 0)
I know how you feel Sierra. I tried to avoid it and did for years. I just started it 3 weeks ago. Yes you need to have that TPMT test first before starting it. It is good info that tells them weather or not your liver can handle the drug. Keep asking questions if you are not sure. If your GI makes you uncomfortable find a new one. That is what I just did.

BTW what are your symptoms and how long have you had UC?
Posted 5/31/2012 1:00 AM (GMT 0)
Yes - you need to call back and push for the TPMT and question the frequency of labs. I think all GI's handle a bit differently, but they should be frequent at the beginning and taper down if results continue to be normal. For another perspective, mine were weekly for month one, every other week for two months, and I'm now at every two months for the next year. Good luck!
Posted 5/31/2012 1:24 AM (GMT 0)
Thanks for the replies. Seasons21, I was diagnosed in 2010 but had symptoms 5 years prior to that. I was misdiagnosed by a GI who said "It's probably a hemorrhoid." I continued to have bloody stools/frequency/urgency that usually subsided in 2 weeks about twice a year. Then I got really sick and was diagnosed with pancolitis in 2010. I have been on Apriso, entocort, and rowasa enemas but they have stopped working for me and I have been flaring for the past 8 out of 12 months so I'm ready to take the next step and get my life back. What would happen if I started taking the 6mp without having that TPMT drawn? I just had labs drawn today and I would hate to have to go back tomorrow but I will if it's necessary. It's kinda strange that the PA didn't mention that though.
Posted 5/31/2012 1:32 AM (GMT 0)
Also, does anyone know if 6mp increases your risk of skin cancer? I think I heard this somewhere.
Posted 5/31/2012 1:37 AM (GMT 0)
The TPMT test measures your body's ability to metabolize the drug. Some people can't metabolize it.
Posted 5/31/2012 2:27 AM (GMT 0)
I do drink alcohol but I don't drink very much. As for skin cancer, yes, you should be careful and try not to get too much sun.
Posted 5/31/2012 3:28 AM (GMT 0)
I get checked every 6 months for skin cancer anyway even before 6mp. Also from what I understand it is usually non malenoma type skin cancer.
Posted 5/31/2012 12:57 PM (GMT 0)
Hey Sierra,

I would seriously consider changing doctors.

The TPMT test is important, it checks for your risk of serious side effects and if the results don't look good the doctor should not put you on 6MP or should use a much lower dose. Some good info on it here:

http://www.labtestsonline.org.uk/understanding/analytes/tpmt/tab/test

PA = physician's assistant right? They should not be deciding which drug you should go on, the doctor should be doing that. And is this the same doc that misdiagnosed you with hemorrhoids.

You are not really supposed to drink when you're on 6MP, there's a warning right on the label. Drinking in moderation is unlikely to do serious harm but you might get drunk faster and you're putting added strain on your liver (6mp + alcohol). When I was on 6MP I had maybe a few drinks in a month and now I'm going off 6MP because my liver is not taking it well but I really don't think those few drinks made the difference.

I hope you feel better soon!
Posted 5/31/2012 8:08 PM (GMT 0)
EqualsTwo,
My current GI is not the same GI that misdiagnosed me. And I called the office today and asked the nurse to ask my GI about ordering the TPMT test. I have not heard back from her yet. I will wait to start the 6mp until I get the test done. I appreciate everyone's help!
Posted 5/31/2012 8:19 PM (GMT 0)
Ugh! So I just heard back from the nurse at my GI office and she told me she talked to the PA (physician assistant) about the TPMT test (even though I asked her to talk to the DOCTOR). The PA said that I will have the TPMT test done 6 weeks after starting the med and that I don't need it before. This is frustrating. I guess I'll just start the 6mp and hope that I'll be ok.
Posted 5/31/2012 8:50 PM (GMT 0)
Hey Sierra,

I understand not wanting to argue because I hate it too but I feel very strongly that they should do the TPMT test first. True, we didn't always used to have TPMT tests available but my GI doc said that back then they started people on lower doses (I had the TPMT look fine and started at 1.5ml/kg and still had liver problems).

Are you considering switching to a different practice?
Posted 5/31/2012 9:23 PM (GMT 0)
TPMT before treatment seems to be standard practice. Insist- if they refuse, then request that they schedule you with someone else ASAP. Your GP may also order it for you if you ask.
Posted 5/31/2012 10:09 PM (GMT 0)
I had to respond to this because my old GI office used to do the exact same thing to me - whenever I called to ask the doc a question they would push me off to the PA and tell me it would be a month or more before I could talk to the doctor.  The PA clearly knew NOTHING - she was pretty much a prescription pad owner who wrote out prescriptions for whatever I told her I needed.  I finally got fed up with the way they ran their practice and that's when I started going to Mayo (who also tried a similar practice on me by pushing me off on an intern, but after flaring up I insisted to go back to the actual doctor and see him now).

You have to get the TPMT test done first - it makes no sense at all to do it 6 weeks after starting the med as by then you'd know if you tolerated it or not.  It's pretty clear that PA has no idea what she is talking about. I agree with the previous posts - you should insist on talking to the doctor or if possible get your GP to order the test so you can at least get results while you look for a new GI office to go to.

Good luck, I hope you are able to start the 6mp soon!

Posted 5/31/2012 10:14 PM (GMT 0)
Yes - they MUST order the TPMT test. Please don't take the med before you have it.  I mentioned earlier that some people can't metabolize - what that means is that it can build up in your system and become toxic.  I didn't want to scare you with that earlier, but it sounds like the PA explained nothing to you.  Take care!
Posted 5/31/2012 10:53 PM (GMT 0)
It is not a MUST that you have a TPMT before starting 6-MP.

My daughter did not have it done until she had been on 6-MP for about 2 mo-

they do need to check frequent CBC and Liver function tests because if anything is amiss it

will show up in yout liver lab tests like ALT and AST.

It seems that all Dr's do it differently and it may be based on thier experiences with certain drugs.

Good Luck Sierra- I hope 6-MP works well for you turn

Posted 5/31/2012 11:32 PM (GMT 0)
The TPMT test is definitely NOT a must. Remember, it's a fairly newish test and obviously the meds are not.

However, as stated above, most competent doctors DO order it before starting their patient's on Imuran/6-MP as the test gives them an idea about how their bodies will handle the drug. However, even having a normal TPMT test doesn't mean anything in regards to side effects. It's just that if you're low or have intermediate enzyme levels, you will almost certainly have some sort of toxicity (liver or low white blood counts) to Imuran/6-MP.

The test your PA might be talking about is the metabolite testing which is to test to see how much of the actual drug is in your blood (to see if it's in the therapeutic range). That is something doctors might do if you have been taking the drug for awhile and not noticing any positive changes.

Also, I know my insurance (Aetna) does not cover the TPMT test or the metabolite test to measure drug levels for UC, so there is a possibility you might have to pay roughly $150 for either test.
Posted 6/5/2012 2:57 PM (GMT 0)
Late to respond but I'll add my two cents. Agree with the others that the TMPT test is needed at the onset to see if you can properly metabolize the drug. My GI did it prior to me starting 6MP. One of the risks of 6MP is liver toxicity and they should test your liver functions every month to see if you have elevated AST / ALT enzymes. If these are elevated its a sign of liver inflammation. Alcohol does the same thing so probably not a good idea to drink while taking it. My doctor started me @ 50 mg and then upped it to 75 mg. At that point my ALT/AST went way up and we stopped taking it.
Posted 6/5/2012 5:05 PM (GMT 0)
One of the common side effects of 6-MP is nausea. I was recommended to take it at night to avoid the nausea during the day. Might even want to get a prescription to help with the nausea just in case.
Certainly try to get the TPMT test, but the frequent blood work is an absolute must.
Hope it works well for you.
Posted 6/5/2012 5:35 PM (GMT 0)
     By TPMT...do you mean the Prometeus Test?  My GI doctor never ordered it for me until I was on the 6MP for several months.  I believe I even had blood work drawn...CBC, liver enzyme levels, etc BEFORE he ordered the Prometheus.

     There is a warning NOT to drink while on 6MP because the drug in itself can cause liver damage and the added alcohol will put more burden on the liver.  I used to have a glass of wine now and then.  During the ten years I took 6MP my bilirubin was always twice the normal limit but my GI doctor never seemed concerned (sure, it wasn't HIS liver).  He did get concerned back in 08 when I was hospitalized for a bad flare and uncontrollable high BP and my pancreatic enzyme levels were 4x the norm.  He did take me off the 6MP at that time, but as soon as my levels were back within normal limits...zap...right back on it again.

     Had surgery in 2010....soooo happy to be off all those poisons.

Posted 6/6/2012 5:43 AM (GMT 0)
Thanks for all the responses! I really appreciate it. My doctor actually called me that day and said that she would order the TPMT test. But she said I could go ahead and start taking the medication (without waiting for the results-which still makes no sense to me.) I have not started taking 6mp because I am waiting for the results. It will take 7-10 days because it has to be mailed to the prometheus lab. She wants me to follow up with her, not the PA, in 2 weeks.
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