I am in complete panic mode. We stopped 6mp about a week or so ago due to elevated liver enzymes and then rechecked blood work this week to see if they went back down so we can start new meds. Doctor called me yesterday and said they went up instead of going down like we hoped. He even seemed quite concerned. I took my son back in yesterday for more blood work to test liver function. I am so scared and on verge of tears constantly, yet don't want him to know anything is abnormal. Results will take a few days to come back. Can someone please settle me down??
Elevated liver enzymes-scared
- Thread starter lcpalmer
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Apr 15, 2012
- Messages
- 14,792
Why would results take a few days???
Ast and alt should be done in a hour tops at a hospital lab
Sometimes the liver isn't happy in crohns patients regardless of 6-mp
But the good news is your Gi is on top of it and should be able to figure out the why
Soon and get a plan together
Ast and alt should be done in a hour tops at a hospital lab
Sometimes the liver isn't happy in crohns patients regardless of 6-mp
But the good news is your Gi is on top of it and should be able to figure out the why
Soon and get a plan together
I wouldn't panic. My daughter was over 300 when we stopped 6mp. Our GI wasn't panicked and we didn't retest 1 week out. I know it is scary when things are off, even just a little, but don't stress too much. He isn't symptomatic (my daughter was) and his numbers will go down in time. Hang in there!
- Joined
- Apr 15, 2012
- Messages
- 14,792
http://www.ccfa.org/resources/liver-disease-and-ibd.html
Things they will look for
EIM of the liver are common in crohns
Dancemom did they ever figure out why your dd had liver issues for so long ( not med related ) since she doesn't have crohns ? Is that part of her immunodeficiency disorder ?
Has hers finally settled down or do you see an increase with infections ( colds strep etc...)?
Ds just had biopsies confirming sweets syndrome (prior to that it was just a possible dx ) which hasn't let up so immunodeficiency is moving up more on our list .
Fwiw Ds was in the 300's when he was taking 6-mp but his was med related so once we stopped it did go down quickly
Not sure if it was one week or two weeks ...
Things they will look for
EIM of the liver are common in crohns
Dancemom did they ever figure out why your dd had liver issues for so long ( not med related ) since she doesn't have crohns ? Is that part of her immunodeficiency disorder ?
Has hers finally settled down or do you see an increase with infections ( colds strep etc...)?
Ds just had biopsies confirming sweets syndrome (prior to that it was just a possible dx ) which hasn't let up so immunodeficiency is moving up more on our list .
Fwiw Ds was in the 300's when he was taking 6-mp but his was med related so once we stopped it did go down quickly
Not sure if it was one week or two weeks ...
crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,469
No experience here but going to throw a bubble dwelling guess out there in an effort to make you feel a tad better.
Perhaps, the 6mp takes a while to affect the liver...like more than a week. So even though you stopped the drug the last dose was still working it's way through and caused the further increase? Maybe you just have to wait a little longer for the drug to clear his system and for the numbers to go down?
I know we all do it but try not to read into whether or not the doc is concerned. Concerned will be when he says you have to schedule a liver biopsy etc. If he is fine sitting tight and waiting for another test then you should be also.
Easy for me to say...harder to do. We have a family history of bad livers and an abnormal result would have you peeling me off the ceiling.
Does your son have Crohn's or UC?
Hang in there and keep us posted.
Perhaps, the 6mp takes a while to affect the liver...like more than a week. So even though you stopped the drug the last dose was still working it's way through and caused the further increase? Maybe you just have to wait a little longer for the drug to clear his system and for the numbers to go down?
I know we all do it but try not to read into whether or not the doc is concerned. Concerned will be when he says you have to schedule a liver biopsy etc. If he is fine sitting tight and waiting for another test then you should be also.
Easy for me to say...harder to do. We have a family history of bad livers and an abnormal result would have you peeling me off the ceiling.
Does your son have Crohn's or UC?
Hang in there and keep us posted.
Prior to starting 6mp her liver numbers were always in range. Never even on the upper end of normal. They rose pretty quickly on 6mp, but oddly enough it seemed to really help her in all other areas. She was on it for about 3 months before having to discontinue.
Now her liver numbers are elevated frequently, but never at a level that would concern anyone. Maybe double the expected range. Seems to be worse if she's needed Tylenol or Ibuprofen prior. Or maybe it's actually the illness that prompted the med use causing it to rise. Didn't think of that. It isn't linked to her immunodeficiency specifically but her body does all sorts of weird things. Finicky liver is my unofficial diagnosis. Lol
- Joined
- Jan 7, 2014
- Messages
- 1,134
I had elevated liver enzymes on MTX. Was off for a month and my levels were normalized by the end of that month (maybe earlier but that's when we retested). So don't panic if it doesn't come down right away.
- Joined
- Sep 19, 2010
- Messages
- 4,407
Agree with the others it is not unusual for them to take some time. It sounds like your doctor is doing the right thing. Fingers crossed that they start to decrease.
I would make sure not to give your child any Tylenol without consulting your doctor prior as Tylenol is very rough on the liver.
Will be waiting to hear your update. Keep us posted.
I would make sure not to give your child any Tylenol without consulting your doctor prior as Tylenol is very rough on the liver.
Will be waiting to hear your update. Keep us posted.
He is just on a probiotic, fish oil, vitamin d3, and flintstone multi vitamin with iron. Doctor said none of those should affect his liver.
I am hoping and praying you are right!
My son tried imuran (sister drug of 6mp), and his liver enzymes skyrocketed very quickly. He had a physical reaction to the drug too. He would get a fever of 105f within two hours of taking the med (which he took at bedtime), then we'd be up all night with him until his fever settled in the morning. He was on the med for just a few days, but as I recall, it did take some time for levels to come back down. While this needs to be addressed right away, IMO, I don't think you need to panic yet. Keep us posted on the results!
Thank you all for the support and thank you to God for the good results! His liver enzymes are back to normal and all liver function tests came back good! Now we are back to figuring how what treatment to try next. Clearly his body couldn't tolerate the 6MP---we are now leaning towards the methotrexate weekly injections----any advise there?
- Joined
- Apr 15, 2012
- Messages
- 14,792
Ds did them
They made him sick or it wasn't enough
But make sure they give him folic acid daily and if he has flu like symptoms they can increase the Folic acid
Fwiw he is on Mtx orally right now plus humira without issues from the Mtx
They made him sick or it wasn't enough
But make sure they give him folic acid daily and if he has flu like symptoms they can increase the Folic acid
Fwiw he is on Mtx orally right now plus humira without issues from the Mtx
Last edited:
- Joined
- Jul 2, 2013
- Messages
- 6,750
We have done MTX injections. My older daughter is still on them and they work VERY well for her!
Some kids do have side effects and get sick from them. Others tolerate them with no problems. It really varies and unfortunately, there is no way to know.
Folic acid helps prevent side effects. The dose can be increased if he does have side effects. My older daughter takes 2 mg of folic acid a day.
Zofran can be given for nausea.
My younger daughter had awful nausea and dizziness with the MTX shots. We tried everything - giving the shot at night so she could sleep through the worst of the nausea, dosing Zofran before, and then also giving to her the next day, other nausea medications like Kytril, folinic acid (Leucovorin), upping her dose of folic acid, reducing the dose of MTX etc.
Unfortunately, nothing really worked well enough for her and the two days of extreme nausea and dizziness were not worth it and she discontinued MTX. It did work VERY well for both her joints and her gut so we were very disappointed.
Every kid is different - my older daughter is able to tolerate the injections no problem. She does do them on a Friday night, so that she has the weekend to recover if necessary, but honestly, she's fine by Saturday. Maybe a little nausea and fatigue but she doesn't even always need Zofran.
I'm sure some more parents will chime in with their kids' experiences on MTX - MANY kids have no side effects at all.
Tagging Clash, crohnsinct and pdx.
Some kids do have side effects and get sick from them. Others tolerate them with no problems. It really varies and unfortunately, there is no way to know.
Folic acid helps prevent side effects. The dose can be increased if he does have side effects. My older daughter takes 2 mg of folic acid a day.
Zofran can be given for nausea.
My younger daughter had awful nausea and dizziness with the MTX shots. We tried everything - giving the shot at night so she could sleep through the worst of the nausea, dosing Zofran before, and then also giving to her the next day, other nausea medications like Kytril, folinic acid (Leucovorin), upping her dose of folic acid, reducing the dose of MTX etc.
Unfortunately, nothing really worked well enough for her and the two days of extreme nausea and dizziness were not worth it and she discontinued MTX. It did work VERY well for both her joints and her gut so we were very disappointed.
Every kid is different - my older daughter is able to tolerate the injections no problem. She does do them on a Friday night, so that she has the weekend to recover if necessary, but honestly, she's fine by Saturday. Maybe a little nausea and fatigue but she doesn't even always need Zofran.
I'm sure some more parents will chime in with their kids' experiences on MTX - MANY kids have no side effects at all.
Tagging Clash, crohnsinct and pdx.
- Joined
- Apr 26, 2012
- Messages
- 6,370
My son does mtx injections weekly. He was on oral mtx before he was switched to injection.
He has had no side effects with either. He takes 1mg of folic acid daily since mtx is a folate antagonist so folic supplements are generally prescribed as well.
My son takes humira as well and before that he took remicade with mtx. I can't say how helpful the mtx has been for his CD (although it is also helpful to helping prevent antibodies to the biologic) but it has been great for his joint pain caused by JSpA(an EIM of CD).
He has had no side effects with either. He takes 1mg of folic acid daily since mtx is a folate antagonist so folic supplements are generally prescribed as well.
My son takes humira as well and before that he took remicade with mtx. I can't say how helpful the mtx has been for his CD (although it is also helpful to helping prevent antibodies to the biologic) but it has been great for his joint pain caused by JSpA(an EIM of CD).
- Joined
- Dec 26, 2014
- Messages
- 1,264
Glad to hear about the liver enzyme results! What a relief for you. No experience with methotrexate injections here, but my daughter is on oral mtx along with Remicade, and she doesn't have any problems with it. It seems to help with her Crohn's symptoms, and it is hopefully helping prevent the formation of antibodies to Remicade. Hope it works well for your son!
Last edited:
crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,469
Both of my girls have taken I jections and oral with no side effects at all. My older daughter does injections with remicade. My younger daughter started with injections and mived to oral. She did as much as 20mgs oral and no side effect. That is her only therapy and the jury is out on how well it works. We actually are debating adding a biologic. Should know more in a few days when fc results get back
