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Med switch due to cancer risks

DS has done very well on 6mp for the last 4 years. At his GI appointment yesterday the Dr. said he wants to switch him to Methotrexate. The GI had a male patient last fall come down with a bad case of mono and then was diagnosed with Leukemia. Johnny was tested in fall of 2013 for any EBV antibodies to see if he has ever had mono and he has not, but because he is starting high school next year (mono is more common in high school) and is a young male, the GI is not comfortable with him continuing on 6mp. So for some reason he will wait till fall, scope him again, and then start Methotrexate.

Johnny's fecal cal has also started to creep up and is at 110 now. GI is not super concerned but doesn't like the upward trend.

I don't deal well with change:( Anyone switched from 6mp to methotrexate while 6mp was working?

Any advice on pill or injection?
 
Sorry about the creeping numbers and yes I hate change also.

Grace has never done 6mp but does do the mtx injections.
I've heard the mtx pill can be hard (not everyone) on the stomach.
Grace has stomach involvement so we do the shots.
She doesn't seem to have any side effects from it.

HUGS
 

my little penguin

Moderator
Staff member
Most of the current reflect that 6-mp/Aza increase the cancer risk a lot in young males.
Most gi are starting kids on Mtx instead for that reason.
DS switched from 6-mp to Mtx due it not working.
He used injection since it was monotherapy .
Even though your switching Mtx will still take 8 weeks to kick in fully and 6-mp starts losing its power after about a week( at least for DS )
So prepare for possible steriod as a bridge .

DS got flu like symptoms on Mtx injections but he was using only 1 mg of folic acid at the time

He now takes the pills without any issues but also takes 2 mg a day of folate ( easier for the body to use)

Makes sense to wait to scope first since he may end up on steriods and that would obscure the scope results
Plus you want to know where you are starting at to make sure Mtx is working later .


Good luck
 

Tesscorm

Moderator
Staff member
Ugh, change is always upsetting. :ghug:

Seems like his GI is very proactive and will follow the transition closely. I hope his scopes show that his recent FC numbers are nothing to worry about!!

If it's any consolation, I don't believe there are antibody worries with stopping 6mp, so it will always be a med that J can go back to if he ever needs it. :ghug:
 
Yes, GI switched Jack to methotrexate for just that reason when he was starting Junior high but unfortunately he had a reaction to the metho but for what's it's worth it worked really well to control the disease the short time he was on it.
Only time I like change is after when it works otherwise I'm just a mess.
 
Thank you all for the input!! I can't tell how nice it is to know you are all here for me whenever I need you!!!:ghug:

Farmwife, Johnny has crohn's in his stomach so maybe injections would be better??

MLP, Johnny will want to avoid steroids if possible, is there still a lag time with injections? The GI mentioned the injection being faster acting but I'm not sure if that was what he meant. He sort of made it sound like the decision about pill versus injection wouldn't be made until we had all the facts, but you all have helped so much in giving me some understanding and just making the unknown a easier to deal with.

Tess, Do you know if there is an age where they worry less about the cancer risks for boys? I would like J to have the option of starting 6mp again.

Jmrogers4, I agree with you, I don't like change either!! Especially since last week everything was fine. I can usually just shove the cancer risk thoughts out of my head, I don't like having to think about that either. But I am glad the GI is switching him.

Thank you!! I will keep you updated!:thumright:
 

Tesscorm

Moderator
Staff member
I don't know but I've always read teen boys and young men (into mid-late 20s).

I'm also confused if the increased risk stays with them always, even if off the med. :( I know I've read that the increased risk stays even after discontinuing the med BUT the decision of your and Jacque's GIs to take the boys off 6mp during these years seems contradictory to this?? But, likely there are conflicting studies so better to err on the side of caution??
 
Yes exactly that was the GI's reasoning err on the side of caution, again the risk is tiny but as Jack's GI put it at the time as a doctor I can look at and see such a tiny risk that it is almost not worth considering but as a parent any risk is too much so I always like that fact that he thinks about what he would do if it was his child in that situation.
 

Maya142

Moderator
Staff member
Sorry to hear he has to switch, that's always tough. We've tried MTX and Imuran but only with a biologic, never by themselves.

Injections were much better for my daughter in terms of side effects (she also has Crohn's in her stomach I think). If he does have issues with side effects, let me know - I have a whole list of tips and tricks! MTX is supposed to take 6 to 8 weeks to kick in, so it is possible he might need steroids :ghug:
 
I asked the GI if the risk went away once he stopped taking 6mp and he said yes, that after he stopped taking it his risk would be that of the normal population.

I have read conflicting info about this but I do trust his GI.
 
Hard to rock the boat as they say, but maybe if the numbers are creeping up slightly it will be a good swap. I don't like my son being on mercaptopurine but with exams at school this year and next I am too nervous to suggest anything. Life is so complicated!
 

my little penguin

Moderator
Staff member
As far as steriod bridge
DS was a mess when we switched from 6-mp to Mtx
So we added pred as a bridge
But for DS Mtx alone wasn't enough so every time we tried to wean the pred DS had vasculitis- that all the docs could see .
We tried for 10 weeks even increased Mtx dose
Nada
At that point gave up and started remicade to get off pred


That said you could do partial en with diet or EEN
As a bridge

I can say we had to hold humira and Mtx for basically the month of April .
No other meds due to infections
DS became a mess quickly and we had to start pred for the arthritis that flared
The gut was ok since gi had him start partial en with exclusion diet .
 
I don't know why I didn't think of EEN, maybe because he has already used Pred in the past?? I think he would be up for that. I am praying his fecal cal goes back down to the 20's like it was and maybe the GI won't require a bridge.

The GI said something about the injection being faster acting, would he still need a bridge if we choose the injection over the pill??

Sascot- I hear what you are saying, I think because Johnny is having a blip anyways they thought it might be a good time to make the switch. They also thought he had leukemia last fall when his spleen was enlarged (we still don't know why) so I think the Dr is just being extra cautious.

Keeping my fingers crossed it all goes okay!! He will be starting high school and trying to make the varsity basketball team in the fall. He has worked so hard, I just hope this med change doesn't goof things up for him.
 

crohnsinct

Well-known member
Injections are usually recommended due to inflammation so they bypass the digestive system as an inflamed system won't absorb the meds well. It doesn't much matter injection vs oral...docs still quote 8-12 weeks to become effective. Injections generally make side effects easier to tolerate but that said, O had no problem with oral dosing and T is having a tad bit of trouble with injections so go figure.

You mention a blip. May I ask what is happening other than the increasing FC? Is he experiencing systems as well? I ask because T's last FC count was 256 and we just being watchful and waiting. It was only one test and I think your son has had a few that are trending up so maybe that is the difference. I am just trying to get a feel for other docs tolerance on FC numbers.
 
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