Medication Decisions-Mtx or 6MP?

[ttheresa5]

I am relieved and saddened to have found this forum, but glad to know that many others struggle with the same issues and have found community here.

The short story: Son was diagnosed with small bowel Crohn's at 11. Biggest symptom was iron deficiency anemia. Took Pentasa for a few years, things got better, we went on with life. Kept up with the ped but not the GI.

Now he is almost 18. Low hb and fatigue drove us back to the GI. Clean scopes. Pillcam showed same area of bleeding. He is not classic Crohn's-no d, no abdominal pain, no weight loss, fever, etc. so I think we have all had trouble accepting that it really is Crohn's.

GI doc tried Budesonide for 3-4 months with no results. Hb continued to drop. Completed 3 weeks of pred and that stopped the occult bleeding and hb went up a point.

Now we are to choose between Mtx or 6MP to keep what we've gained. These meds scare me, but I am starting to see that this decision must be made. Any advice/experience would be appreciated.

thank you!

 

[Scaryman]

Is it possible to get another opinion? I only speak from experience. But I think Biologics maybe a better solution because they are cleaner drugs. I do take MTX as well as Humira. BUT- If it were me I'd get a expert opinion.

 

[CrohnsKidMom]

Hi ttheresa, welcome to the forum. My son is 9, was dx'd last yr at age 8. His CD is in the small intestine as well. He has also never had any diarrhea, but did have significant abdominal pain, among a bunch of other symptoms.
Some GIs use a "step-up" approach (as ours typically does); starting with Imuran/6mp and moving up from there. Some GIs step-down, starting with the biologics.
Our son was initially given prednisone while Imuran (6mps's sister) was started. It's simpler to take as it's a pill, but my son could not tolerate it-high fevers and elevated liver enzymes. He was switched to methotrexate injections (which also comes in pill form, but our GI would not prescribe). It has worked well for him and he is in remission (knock on wood). Both are scary drugs, but I think Imuran has some added risks if it's taken by young/teen boys. I can't remember what they are, but others will likely be along who can advise.
I hope you get the info you need and get your son back on the road to feeling well again.

 

[araceli]

Hi and Welcome. i am sorry you had to find us but glad you did because in here you will receive a lot of support. We don't have experience with any of those meds. We had to jump to the biologics due to anal fissures. Some in here take drug combinations. I will suggest you get information on all the meds available and ask you doctor why he recommends a particular one. Also remember that not all meds work for everyone and not all have the side effects. Crohn's is very different in people, some have all the symptoms, some just a few, or like my daughter, no symptoms at all while the disease is causing damage inside. I am pretty sure more parents will post sharing their experience with those meds. Sending Hugs and Support your way.

 

[Patricia56]

Given those two choices and that you have a son, I would go with MTX not 6-MP/Imuran/Azathioprine. The later has been associated with a minute but definite increased risk of cancer and may be linked to a cluster of aggressive cancer cases in adolescent/young adult men. Now this risk is much, much, much smaller than the risk you take every day getting in a car so keep that in mind when you are evaluating the riskiness of these meds.

I would also point out that MTX has a shorter track record for use with CD than 6-MP and it may only be a matter of 10 or 20 years and MTX may also be found to have an increased risk. But given what we know today, MTX would appear to have a smaller risk profile for cancer.

Side effects people experience vary widely for both drugs but MTX is best given by weekly injection (track record for oral administration is poor) and many kids seem to get fatigue and nausea as well as increased sun sensitivity with MTX which is more bothersome than the side effects from 6-MP which generally seem to improve with time.

Tough choices - do what you think best and don't look back. You can always switch meds if you need to.

 

[my little penguin]

Yeah that ^^^^
DS switched numerous times .
He is now 10 and was dx at age 7.
DS has been on both 6-mp and Mtx .
Personally when all is said and done I prefer biologics - DS experienced less side effects on them .
They are the only med proven to change the disease course ( reduce the risk of surgery later).

DS currently takes humira and Mtx .
Good luck

 

[Sascot]

Hi and welcome. My son has only been on 6mp, so I have no experience with methotrexate. The 6mp seems to work okay for him, no side effects so far apart from some tiredness. Good luck with your decision.

 

[DanceMom]

We've done both 6-mp and MTX. The 6-mp initially gave her severe nausea but that side effect wore off after a few weeks. The 6-mp worked well until it affected her liver and we had to discontinue. We then tried MTX injections. One benefit of MTX was only taking it weekly as opposed to the daily 6-mp. The MTX did not affect her liver but it also didn't relieve her symptoms. Her only side effect was significant hair loss.

Every child is different and will react differently to medications tried. I hope that whichever med you choose brings full remission for your son!

 

[Farmwife]

My five year old is on mtx. It's had no affect on her health but we had to add humira as mtx alone want enough to bring about remission.

I hope all is sorted out soon and welcome aboard.:hug:

 

[Maya142]

My daughter has been on MTX and Imuran (similar to 6MP).The MTX made her really nauseous and dizzy for two day, but she had kind of an extreme reaction -- most kids do just fine with it. It did help her A LOT, especially her joints and I wish she was still on it!

She has just started Imuran (been on it 4 weeks!) and initially was nauseous, but now has no side effects.
Good luck!

 

[ttheresa5]

Thanks everyone for your replies. It helps to talk with other parents who have experience with this disease. We are leaning toward the methotrexate, but I will ask our GI about the biologics.

I think my nagging question is still is it really Crohn's? Part of this is probably denial, but the other part is that this is my kid who also has allergies and asthma, and now in the last year is struggling with bad acne and fatigue. I grew weary of going to all of the specialists who kept saying that nothing was related and just prescribed more pills for each problem. We have not seen an allergist for years. Would it be worth pursuing testing in these areas?

I understand that in the big picture things are not that bad yet. However, I'm still confused about how all of this fits together.

 

[my little penguin]

A lot of kids here have asthma allergies etc and crohn's.
DS included since crohn's is an auto immune disorder ( key word immune)
Most of these kids have overly aggressive immune systems .
Our allergist said auto immune disorders and asthma/allergies are very common in the kids they see in clinic .

We did get 2 second opinons for DS since he like most kids here does not have typical crohn's symptoms .

Good luck

 

[AZMOM]

We never could get the 6MP to a therapeutic level without her liver staging a revolt. She just couldn't make it work.

We have coped well and done well overall with MTX, although right now is a struggle.

Hugs,

J.

 

[Jmrogers4]

Yeah definitely not a typical symptom kid here. My son has been on both methotrexate and Imuran (sister drug to 6MP). The methotrexate worked better but he had a reaction to it and could not take it any longer.
Sounds like his GI is definitely a step up approach in your son's case. We are currently on remicade and doing really well but it took us a while to get to the point where we said we need it (again not typical symptoms so we always felt it wasn't justified). The difference is night and day. We thought we were in remission before on other meds but compared to how he is now I can say we weren't there. His GI just made the comment last time we were there that clearly he needed the biologic even though all appearances pointed to him not.

 

[Momtotwo]

Side effects people experience vary widely for both drugs but MTX is best given by weekly injection (track record for oral administration is poor) and many kids seem to get fatigue and nausea as well as increased sun sensitivity with MTX which is more bothersome than the side effects from 6-MP which generally seem to improve with time.
.

Patricia- please share more details re. poor track record fot oral mtx.

 

[Patricia56]

There is actually not a lot of research published that addresses this question. But here are two that compare oral and parenteral (IM=intramuscular) MTX. I've run across a couple of others but didn't bookmark them and don't have time to go looking right now.

Use of methotrexate in refractory Crohn's disease: the Edinburgh experience.
http://www.ncbi.nlm.nih.gov/pubmed/18275071

This study started patients on IM MTX shots and then moved them to oral MTX for maintenance. They concluded that oral therapy didn't work as well as the shots.

"CONCLUSIONS:

Parenteral (IM) MTX therapy is efficacious in inducing remission in steroid-dependent CD patients, although its use is limited by side effects in approximately 30% of patients. Low-dose oral therapy does not maintain long-term remission and is not a suitable alternative."

Pharmacokinetic profiles for oral and subcutaneous methotrexate in patients with Crohn's disease.
http://www.ncbi.nlm.nih.gov/pubmed/23190184

This study of the way MTX is absorbed by the body concluded that the bioavailability of oral MTX is not as high as IM form (although the difference is not huge). The authors did suggest oral MTX might be suitable in patients who are unable to tolerate the shots but this was a strictly "chemical" study and did not address questions of remission or maintenance in any way.

As far as I can tell GI docs appear to universally favor IM MTX. There appears to be good evidence for significant risk of GI upset in the literature on the use of MTX in arthritis (RA). Between poorer bioavailability, poor reports in the research literature and GI irritation/upset I think it's easy to see why GI's would strongly prefer the IM route for Crohn's patients.

 

[my little penguin]

From the arthritis side I know the switch from oral to IM happens above 10mg since that has an effect.
DS was on IM as a monotherapy for Mtx
But is on oral since it's being combined with humira and his crohn's is stable .

 

[Momtotwo]

Thanks Patricia and MLP. My son is on oral MTX to prevent antibodies to Remicade. The dr has not mentioned using iIM or SC MTX.

 

[Patricia56]

My son is on oral MTX too - because he refuses to do shots after 2 1/2 years of Humira when he was younger.

It seems like getting into remission especially it's probably most beneficial to go with IM Mtx. But there's always the exception to the rule right?

 

[Maya142]

Another issue is side effects with oral MTX -my daughter had way more side effects with oral MTX so we switched to the shot (and she had fewer side effects with that). That said, M is super sensitive to MTX it seems, so if your kid is fine on oral, I wouldn't worry.

 

[my little penguin]

DS had lots of issues with IM Mtx but very little so
Far with Mtx oral