Remicade and 6MP or remicade and methotrexate? Need help deciding please.

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griffin123

griffin123

Joined
Jun 21, 2013
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My son is getting on the Remicade train next Friday but I now have the decision of either keeping him on the 6MP while on Remicade or stopping the 6MP and starting methotrexate while he's on remicade. I'm confused and lost. I wasn't expecting to make a decision like this at his appointment today but his doctor and my son both think he needs to start remicade. The GI says remicade works better when taking with another med but I need to choose which one. The GI knows I worry about the cancer side affect so he told me that the methotrexate doesn't have cancer as the side affect like 6MP does.

I'm lost and sad, I don't want to make this decision I just wish this was all a dream and I could wake up in the morning and my son won't have to go through this. I cried on my way home from his appointment today, I try not to cry in front of my son but I was just so overwhelmed I couldn't hold it in. I am so proud of my son though, he is a strong young man and a trooper. I love him so much he makes me so proud.

Sorry to ramble on but if anyone has any advice on which med I should have him take with the remicade I would greatly appreciate and info or feedback you guys can give me.

Thanks
 
No advice really. My son is only on Remicade.

Maybe I misunderstood when our GI was telling me this, but I thought the risk of lymphoma from the 6-MP/Remicade combo is from having taken 6-MP at any time and Remicade after, not necessarily together at the same time. Does that make sense? Since my son had been on 6-MP (well, Aza) and then switched to Remi, he still falls in that risk category even though he's no longer on Aza.

If that's really the case, then I'm not sure it matters if you choose 6-MP or mtx if your primary concern is the lymphoma risk. I'm sure someone else will be along to clarify, but I'm going to tag my little penguin. She's knows everything :)

Remicade has been wonderful for my son. I hope yours benefits from it too!
 
Hey Griffin,
We are in exactly the same position! :ybatty: I am so sorry you have found yourself facing these decisions :ghug: I am right there with you and have cried so much in the last few months that I am currently in an "all cried out" place, numb is probably the best description :( Our son is also 13 (about to turn 14) and is starting remicade after his 2 months of EEN and colonoscopy (30th Jan). He is also currently on Imuran and the private Ped Gi is giving us the choice to move to methotrexate also! The rationale we have been given by our Dr is that the lymphoma risk increases with length of time the meds are taken not just what meds are taken. So our Dr has suggested that methotrexate is better (for teen boys) if you are needing to stay on remicade for a long time. Once in remission for at least 12mths to a year and a half, he then tries to move teen boys down to just methotrexate.
Our first private Ped GI was happy to go with just remi, (though I know studies say that used in combo has greater chance for not developing antibodies). The IBD clinic prefers remi/Imuran combo (unless you have joint issues then they use methotrexate). And our second opinion private Ped Gi (that we are currently moving to) is the one who prefers methotrexate for teen boys in combo and then hopefully by itself when and if a stable long term remission is achieved. It is crazy how they all say something different and so we really must weigh these things ourselves and do the best we can at the time with the info we have...
To be honest I have read a lot and I feel most comfortable with this remi/methotrexate combo, especially after reading how many on the forum are having success with methotrexate! (Mind you I don't want to face him being on ANY of these drugs, but atm I don't really have a choice.) My next questions are how and when do we make the switch?? Thinking of you and hoping you get some clear direction that feels right for your son :ghug:
 
We have not had any experience with Remicade, but my son is on MTX injections. It has worked very well for my son. You can get fatigue and nausea from MTX. My son had a little fatigue, but it has resolved, and he has not had any nausea. It loosened his stool, but that was a plus for him. Although my son is still a little anxious about the needles, they are small and the medication does not sting when being injected.

Take care as you make this difficult decision.
 
Sorry, we jumped on that train last week. We only do the Remicade though. I know we see different GI's at St. Lukes, we briefly talked about the combo Imuran/Remicade I know Dr. Ellison prefers the MTX/Remicade combo for teen boys but Jack had a bad reaction to MTX so we went Remi only for now. I have to say the difference even after a couple of days on the Remi has been amazing.
We were pretty much freaked out as well. They do the infusion at the office they have a room for it and it made Jack more comfortable since he knows the nurse well and it's nice having the GI poke his head in the door throughout the time as well. They have a portable DVD playing and a bunch of movies, Jack also brought his ipod to play games on.
We go for our second infusion next week. Hang in there!
 
Violet has been on Remicade since Dec 2012, added Imuran May 2013.
Dec 2012 to May 2013 she used methotrexate at a low weekly dose (7.5mg) to prevent antibody formation while on Remicade. I was told that dose was NOT the same as the dose used when methotrexate is for THERAPEUTIC, rather than just antibody prevention, effect, so ask about that too.

When she landed in hosp in May very sick, methotrexate was d/c and Imuran added. Also IV steroids and then oral pred at a significant dose (60mg) with a very slow wean. She finally d/c pred in Nov 2013.

I was as terrified as one can be of the biologics let alone use them together with an immunomodulator! Terrified. Resisted for literally YEARS (3) against her doc's pleading to let him medicate her.

It took her being so sick she needed hospitalization to get me to agree to use Remicade/Imuran combo. Much reading of studies, much emailing between her doc and I trading stats and studies back and forth.
The stats were dismal to me; success on the dual was still less than 50%.

But she was in a desperate state.

It WORKED. She was feeling well in a week, back to normal activity in a few weeks, and in remission since!
Scopes and pillcam Fri Jan 24 to assess, but labs have been perfect.

The lesson: when they get sick enough, the scary drugs start to look like baskets of kittens.
 
My son is on remicade but has never used imuran or methotrexate, so no experience in combining the meds. I just wanted to mention Crohnsinct 's experience with adding to remicade... her daughter was on remicade but was still have some symptoms and GI wanted to add methotrexate, instead they added a course of exclusive EN for six or eight weeks. The EEN period bumped her into remission and she then stayed in remission on remicade alone. (She did add metho later but due to psoriasis.) (I'm sure Crohnsinct will be along and can add more info.)

But, I have also always read that using imuran or methotrexate does reduce the risk of developing antibodies - I've never read that EN has this benefit. On the flip side, I did read that continuing EN (not exclusively but as a supplement) can increase remicade's success by a fairly decent amount (I posted the link/study in the Kids' research thread).

I know how hard these choices are and sometimes having more choices just adds to the agony but, as it worked well for Crohnsinct 's daughter, I wanted to throw out the possibility of EN as another option.

:ghug:
 
My 13 yr old girl is on a combo, methotrexate and Humira when she became allergic to Remicade. There is great promise/results in combining the biologic with Methotrexate. It took me a while to learn how to do the injections of MTX without bruising but otherwise its a good one. Just be aware of the migraines that can come. Catching one early makes a world of difference.
 
Remicade is a supposed "big gun" and works for many all by itself. Why not try Remicade alone and see how it does? If it doesn't work fast enough you could add something else but why over medicate from the start.

Tesscorm had it 100% accurate (she is freaky that way). Remicade wasn't working 100%, added EEN instead of Mtx and she got to remission and stayed there over a year. Mtx was added because of psoriasis and joint pain (they figure psoriatic arthritis).

If the addition is to prevent antibodies, could you start with Remi alone and test for antibodies? Depending on how insurance etc works this could be expensive though.

As for doing the combo and then dropping Remicade down the road...while this sounds appealing, I was be hesitant to drop the Remi as if it turns out that was the drug doing the heavy lifting and he starts flaring again, depending on how long it has been, you may not be able to add the Remi back in as the risk of allergic reaction is high when reintroducing Remi (run on sentence much?).

Good luck with your decision...nothing like a good clear cut plan eh?
 
Thanks everyone for all your information. My son's GI wants to do Remi with another med because he says studies have been done and Remi has worked better with another med taken with it and it also helps with not developing antibodies against Remi. (hope that makes sense lol) I do worry about the cancer because it runs heavy in my family and the GI did say if my son take the Remi with the 6MP it does increase his risk for cancer since that's a possible side affect for both those meds but there has not been any cancer cases linked with the methotrexate. He knows I worry about it so the doc told me to do some research and let him know my decision by next Friday when we start my son's first Remi infusion.
Now my next concern is if I go with the methotrexate I don't want to start both the Remi and the mexo at the same time since they are both new meds what if he has a side affect, how will they know which med caused the side affect?
A year ago today is when he got diagnosed with Crohn's and I feel the same way I did a year ago, lost, confused, sad, and overwhelmed. I think i'm going to call his doctor today and see if we can start the methotrexate here shortly so he's not starting 2 new meds at the same time. uuggghh why all the decisions and choices :(
 
Jmrogers4 said:
Sorry, we jumped on that train last week. We only do the Remicade though. I know we see different GI's at St. Lukes, we briefly talked about the combo Imuran/Remicade I know Dr. Ellison prefers the MTX/Remicade combo for teen boys but Jack had a bad reaction to MTX so we went Remi only for now. I have to say the difference even after a couple of days on the Remi has been amazing.
We were pretty much freaked out as well. They do the infusion at the office they have a room for it and it made Jack more comfortable since he knows the nurse well and it's nice having the GI poke his head in the door throughout the time as well. They have a portable DVD playing and a bunch of movies, Jack also brought his ipod to play games on.
We go for our second infusion next week. Hang in there!
Click to expand...

I am so glad they do the infusions in the office instead of the hospital, that makes my son feel better. He didn't have a good experience in the hospital on the pediatric ward when he was getting the iron infusions.
Nathan's first infusion is next Friday morning. I hope it works for him, he lost 5 lbs since his last visit 3 months ago but he did grow about a half inch since then too but we don't feel the meds are doing a good job right now when he should be growing and gaining the weight so that's why we are going with the Remi.
 
We did Remicade+ methotrexate for my daughter. She did very well on the combination, both her joint pain and stomach pain basically disappeared. She had to drop methotrexate because of side effects (we knew this was possibility because she's been on mtx before) and that's when things started to go south.
Now she's starting Humira + sulfasalazine.
With mtx, it's fairly easy to tell what the side effects are because they occur the day after the shot. My daughter would get nauseous and dizzy, and for her it was bad enough that she could barely get out of bed. Most kids tolerate it fine though. Doctors often prescribe Zofran to help with nausea, and it helped my daughter but in her case it wasn't enough.
That said, the combination of biologic + mtx worked so well for her that I really wish we could try it again!
 
imaboveitall said:
Violet has been on Remicade since Dec 2012, added Imuran May 2013.
Dec 2012 to May 2013 she used methotrexate at a low weekly dose (7.5mg) to prevent antibody formation while on Remicade. I was told that dose was NOT the same as the dose used when methotrexate is for THERAPEUTIC, rather than just antibody prevention, effect, so ask about that too.

When she landed in hosp in May very sick, methotrexate was d/c and Imuran added. Also IV steroids and then oral pred at a significant dose (60mg) with a very slow wean. She finally d/c pred in Nov 2013.

I was as terrified as one can be of the biologics let alone use them together with an immunomodulator! Terrified. Resisted for literally YEARS (3) against her doc's pleading to let him medicate her.

It took her being so sick she needed hospitalization to get me to agree to use Remicade/Imuran combo. Much reading of studies, much emailing between her doc and I trading stats and studies back and forth.
The stats were dismal to me; success on the dual was still less than 50%.

But she was in a desperate state.

It WORKED. She was feeling well in a week, back to normal activity in a few weeks, and in remission since!
Scopes and pillcam Fri Jan 24 to assess, but labs have been perfect.

The lesson: when they get sick enough, the scary drugs start to look like baskets of kittens.
Click to expand...

My son's GI is going to just do a low dose of the methotrexate to help prevent antibody while he's taking the remicade. He will only have to take a couple pills once a week instead of everyday.
 
Is we had similar reasonings, I will say Jack weighed 91 pounds last Thursday he is 96 now and eating, we saw pretty much immediate results. We'll be there Thursday for next infusion.
 
These are always tough decisions! :ghug: But, once the meds are working and he's feeling well, the decision-making can be put behind you knowing he's happy and healthy!! I hope all goes well at his infusion!!
 
My daughter has been on both 6-mp and Mtx (but not Remicade).

The pros for 6-mp: she didn't mind taking the pills
The cons for 6-mp: made her extremely nauseous at first, caused liver toxicity, had to discontinue before reaching therapeutic levels

The pros for mtx: extremely cheap, only takes it once a week, no side effects thus far
The cons for mtx: she doesn't care for the injections
 
DanceMom said:
My daughter has been on both 6-mp and Mtx (but not Remicade).

The pros for 6-mp: she didn't mind taking the pills
The cons for 6-mp: made her extremely nauseous at first, caused liver toxicity, had to discontinue before reaching therapeutic levels

The pros for mtx: extremely cheap, only takes it once a week, no side effects thus far
The cons for mtx: she doesn't care for the injections
Click to expand...

My son hasn't had any problems with the 6 MP besides it's not fully working with keeping the crohn's under control.
He will be taking pills for the mtx not the shot, he likes the fact he will only have to take the pills once a week instead of everyday.
 
My son started on Remicade alone and it was marvelous through the loading doses, it did wonders after the first dose. The problem was once we moved out to the 8 week scheduled symptoms started to show up around the end of week 5 start of week 6. So we shortened the scheduled, upped the dose of Remicade and finally added MTX. He took it in pill form, 25mg once a week. This seemed to turn things around, so much so that C decided at some point during the summer while at his Dads that he didn't need the MTX anymore. He admitted it once he was home and we consulted the GI and he felt that if C wasn't having symptoms then it was fine.

That lasted about 2 months and then the symptoms started returning so we opted for 7.5mg of MTX(pill form) and Remicade every 6 weeks. So far so good for the last several months.
 
Clash said:
My son started on Remicade alone and it was marvelous through the loading doses, it did wonders after the first dose. The problem was once we moved out to the 8 week scheduled symptoms started to show up around the end of week 5 start of week 6. So we shortened the scheduled, upped the dose of Remicade and finally added MTX. He took it in pill form, 25mg once a week. This seemed to turn things around, so much so that C decided at some point during the summer while at his Dads that he didn't need the MTX anymore. He admitted it once he was home and we consulted the GI and he felt that if C wasn't having symptoms then it was fine.

That lasted about 2 months and then the symptoms started returning so we opted for 7.5mg of MTX(pill form) and Remicade every 6 weeks. So far so good for the last several months.
Click to expand...

Thank you, this is the stuff I like to hear lol. I called the nurse and asked a couple questions about remi with mtx and she was surprised and happy to hear me asking my questions, she asked if I was a nurse or a doctor because many parents don't ask those questions lol. I just want to make sure I make the right decision for my son right now. I like to hear stories like your sons, it makes me feel better about my decision :)
 
I totally understand, I freaked and got my son off 6mp asap when he started Remicade. And Remicade works well on its own too, but he developed antibodies.. I guess I would suggest staying on 6mp since he's already on it, without issues, right? changing to methotrexate will take time to build up in his system. You can ideally drop 6mp after awhile. Good luck!
 
- In young men who have been on and failed azathioprine or 6-MP and move on to biologics, the author works to get them off the thiopurine within 6-12 months to reduce risks of cancer. They stay on that long to reduce the risk of immunogenicity.
De Novo Anti-TNF Therapy in Crohn's Disease: Evidence Based Results
and
optimizing Anti-TNF Therapyii
http://www.crohnsforum.com/showthread.php?t=41874
http://www.crohnsforum.com/showthread.php?t=4214

Hi griffin123
Above are some links david posted over a year ago that I read while trying to decide the best course of treatment for my son. Knock wood he is doing great on remicade alone. He was on aza and had just gotton to a theraputic level when he developed a fistula. He continued on aza until after the third infusion. I so know what you are feeling trying to do best by your child.
Here is a link to where I was asking questions similar to you
wish you the best in whatever u decide. :hug:
http://www.crohnsforum.com/showthread.php?t=40859
 
Results: Twenty-five cases of HSTCL were identified. Twenty-two (88%) patients had inflammatory bowel disease and three had rheumatoid arthritis. Four cases (16%) were in women and four patients were above 65 years of age. Twenty-four cases (96%) also received an immunomodulator (azathioprine, 6-mercaptopurine, or methotrexate). Two patients received adalimumab alone.
Click to expand...

From:
http://mobile.journals.lww.com/euro...ewer.aspx?year=2011&issue=12000&article=00009



So it's the combo of an immunmodulater ( Mtx Aza or 6-mp - all are equal)
Used at any time and then adding any biologic.

Mtx + remicade risk isn't as well known in Ibd since Mtx isn't used as much until recently.
The risk has been seen in the arthritis crowd since they tend to use it more.

DS only used remicade but had an allergic reaction after seven months.
He is now on only humira.
6-mp is out since it went to his liver.
Mtx made him feel really sick or didn't work by itself .
Good luck with remicade
 

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