6-MP made him sicker!

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Dec 27, 2012
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Hi all,

So my son has been on 6-MP for several months. About 5 weeks ago his dose was upped from 50 to 75 mg 1/day. For the past few weeks he was getting super nauseous to the point where he missed a lot of school. So we got blood work done and his 6-MP levels are too high so the doc brought him back down to 50mg. His white blood cell count was low and his liver markers were high. His lipase is normal thank goodness. But now I'm really second guessing the 6-MP! If he has only been on it this short of a time and it's doing this? He is also on Colazol. Has tried Pentasa which did nothing. Just needed to vent but of course would love some advice.

I'm one stressed mama.
 
Was he having blood work frequently after the dose was upped? It may have been due to the dose being too high rather than being on it at all. Hopefully someone will be along shortly with more experience with 6MP. I can understand the vent and although I can't give any experience I just wanted to stop in and send some support and hugs!!
 
Sorry to hear he's struggling, Gingermom. With the dose increase he should have been having his bloods monitored weekly or bi-weekly, just like when he started 6MP. Why was his dose increased in the first place?

Nausea scan be a side effect and many people take it before bed to sort of sleep it off. Others have said they split their dose into an AM and PM. Splitting 50mg tablet wouldn't be too hard. We do it here.

As for it not working... I thought the same thing with my son. It didn't seem to be working for the first three months even though his labs said he was at therapeutic levels already. Things seem to be working themselves out over time though. I've been told it can take a year before really working. We're going on five months now and have our fingers crossed.

Aside from backing off the dose, has your GI suggested anything? Allpurinol or anything?
 
Exact same thing happened to my son. We backed the dose down. It took quite a while to get the right dose for him but we got there. There were many times I wanted to give up but I am glad we were patient. There are not many drugs out there to treat crohn's so you don't want to give up on one before you have to. I took us literally a bit over a year to get the dose right.

My son is doing really well now and is in complete remission and feeling great. His fecal cal is normal (47) and he is gaining weight and growing.
 
The 6-mp made my daughter nauseous at first too. I was giving it to her at bedtime but within 5 minutes of taking it she was complaining she felt sick. I started waking her up during the night to give it to her. I'd let her fall asleep, go in an hour or two later, wake her and she'd take the pill. It became pretty routine and most of the time she wouldn't even remember taking it. After a few weeks it no longer made her feel sick so we went back to taking it at bedtime. Might be something worth trying for you though.

Also, I'm curious what his liver numbers looked like. Did you get copies of the labs? My daughter had to stop taking the 6-mp this week because her liver numbers were through the roof. I'm assuming your son's numbers are elevated but not a cause of concern just yet. Our GI liked to check every 10 days-3 weeks as long as the numbers were rising.
 
Thank you for all the words of advice and the support, I needed this badly. We got back in 2 weeks to check his levels again. I guess I'm most worried that he will get pancreatitis from a too high dose. The doc did say we will need to play around with his dose and might get somewhere in between the 50-75mg. He takes zofran when the nausea is really bad. The doc did tell me it takes at least 6 months to see results from the 6-MP. It's just so hard to watch him miss school again and again. He does take it at bedtime and has not complained of an immediate stomachache but then again right now the stomachache is constant. I like the idea of getting copies of his labs. I still feel so new at this and not always sure what to ask for. All she said was his markers were high but did not say how high.
 
Blood work needs to be done often
Get copies always of any tests or imaging etc..
DS had issues with 6-mp
Too high his alt/ast would go up
Too low and he would not get to therapeutic levels.
After eight months we gave up on it .

Is he having his TGGN checked as well for levels of 6-mp
Vs liver numbers ?
 
The blood work goes to a lab called Promethius and they do a special 6-MP screening and she had them add in the lipase. I will get copies of his labs asap. I'm not sure what TGGN is.
 
Sorry, no advice re the 6mp. :( But, just wanted to say hang in there, it does sometimes take time for meds to work. Just sorry he's suffering through this and we all know you're suffering right along with him. :ghug: Hopefully, a slower increase in dosage will help his crohns and not cause nausea.

Did the nausea/stomach pain disappear once he went back to 50? Is it possible that the pain is a symptom of his crohns and not a reaction to the medication?
 
Hi Tess,

Today he is feeling a little better and I can tell just by looking at him. So I'm betting his nausea will reduce day by day. We always rate his days on a scale of 1-10 with 10 being the worst and he said today he is a 5, which is promising. Still no school today but much improved. I hope he can go to school tomorrow..crossing my fingers.
 
Gingermom,

My son has been on 6mp for a year. Started at 50mg soon after diagnosis while he was taking prednisone as well to try and induce remission. Once the pred stopped his symptoms started getting worse again. Our GI also increased his dose up to 75mg. He experienced more stomach pain than nausea. I also believe the 75mg level was causing hallucinations but the GI doesn't agree with me. However there haven't been any issues with pain or hallucinations since reducing the 6mp. Blood work confirmed that even at 75mg, 6mp wasn't at therapeutic levels. GI suggested switching to methotrexate, but I requested we trying adding allopurinol first. He agreed and we reduced 6mp down to 25mg and added 50mg of allopurinol. His liver has been tolerating this medication and it has brought the 6mp up to a therapeutic level. Seems to be working for him. Blood work is critical when adding the allopurinol as it can cause additional problems. Might be worth mentioning to see if it's an option for you. I learned of it on this forum. Our GI hadn't really used it previously.
 
Hi Gingermom, My son was on Imuran for a short while last May. I know it is not the same med, but apparently it's similar. So, I'm not sure if our experience is relevant or not. Anyway, my son had consistent fevers of 105F within 3 hrs of taking the med each night. His liver enzymes were a little high too. No nausea though. The GI didn't think it was the Imuran causing the fevers, but I strongly felt it was. He agreed to hold the med, and bingo, no more fevers. Maybe it's just a matter of changing the dose a bit, I don't know, but I hope you find a solution soon.
 
They(Dr.'s, nurses, pharmacists) never think the medication is causing whatever side effect seems to be occurring. I'm willing to bet it is always the cause.
 

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