Doc appt - Remicade and Methotrexate

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Mom2oneboy

Mom2oneboy

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We had our doctor consult today to discuss the next steps. S has not responded to EN or steroids and his crohn's has actually spread to other areas these past 2 months. He still continues with bloody stools, as well. His doctor is recommending Remicade at this point. He's also recommending that we do methotrexate along with it in order to prevent him from producing antibodies to it. He said once he's in remission we could have the option of dropping the Remicade and remaining on the MTX only while still allowing the use of Remicade in the future if we needed.

For those who don't know, S also has peri-anal issues (has had 2 abscesses) and has lots of inflammation and a stricture in his TI.

4 weeks of EN has only gotten us 1 pound so he abviously has enough going on to prevent proper absorption. The daily loss of blood in his stools scares me to death. I feel like we are just tinkering on the edge here with him and not making any progress at all. I'm fearful of things taking a turn and us being in trouble in a hurry. So me and hubby are ready to take the next step.

Anyone doing Remicade and MTX together? Give me your expert opionions!
 
Surprised at the mix since our doc won't do that combo in the US. I know the UK standards differ on this- most UK studies actually recommend the combo.:ywow:
Also surprised that he is suggesting to go off Remicade and with the option of introducing it later.
I heard that was ok to do with the "other" biologics but not remicade since most will develop antibodies when not exposed after 16 weeks.

There was a study somewhere- maybe i can find it.

One thing to keep in mind MTX is usually only effective for 2 years--- some get 40 months. Long term use will scar the liver in adults. Not saying it doesn't work but taking out your ability to use remicade later would scare me.

ALso doubling up would as well since that increases the "Scary risks" for young IBD boys.

wishing you best of luck in your decision.
 
Hmmm...this is interesting. They are also recommending and immunomodulator with the biologic. All of the research I've been doing points to using both. The, very few, cases of hepatosplenic t-cell lymphoma have all been reported in patients using Remicade along with Imuran (read about 1 case where patient was using Imuran alone). So using methotrexate instead of Imuran is an intriguing option. I have read about arthritis patients using Remicade with methotrexate.
 
Shelley, just offering my support... :ghug: I can easily imagine how difficult it is to come to terms with this. I'm so sorry that the EN wasn't able to take Stefan to remission. I certainly think you are right in wanting to get control of this before things take a turn for the worse. My friend's daughter is truly so much happier and healthier since she started on remicade, it really has been her miracle drug.

Methotrexate is also what Stephen's current GI has said would be his next step when the EN no longer controls his inflammation. Tough things for us to accept when it comes to our children. :(

You might also try to post your question on the Methotrexate and Remicade subforums - you might find more members who have experience using both meds at once.

Sending wishes that he begins to feel better soon!!!
 
MLP, you bring up good points that I will surely be asking about. Would love to see that study too if you can find it.

Twiggy, our doc said they stopped doing the imuran/6mp with Remicade due to the tcell lymphoma issue. They now do MTX and Remi specifically to keep them from developing the antibodies to Remi. We will be moving forward with the Remicade but will have to do lots more reasearch on the MTX.

It was interesting when I asked about what infusion center we would use, we found out that one of the doctors in the practice has a daughter with CD and is also on Remicade.
 
Tess, I was hoping the EN would do it for us too but his disease got agressive very quickly. However, we will be continuing the EN for nutrition. I can only imagine how much weight he would have lost had we not started that up!! His doctor said we can start introducing some foods to him now so he had a few noodles with a tad of butter on them tonight. He said it was the best thing he had ever tasted...bless his heart.

When the doctor mentioned methotrexate YOU are the first person I thought of. LOL
 
Poor Stefan... I remember noodles and butter were one of Stephen's 'first' meals too! And, yes, everything tasted AMAZING! :lol: Having been such a picky eater, I used to tell Stephen I was being given a second chance at 'introducing' foods to him! :lol: Stefan must be ecstatic that he can begin to eat again!

Yep, certainly not looking forward to that doctors' apptmt... when I hear that the EN is no longer working and we're heading into MTX territory. :( Ugghh...
 
It is hard enough to wrap your head around one drug but then so disheartening to hear that now you have to consider another and then combine them! I am so sorry you are having to deal with this.

As our doc is planning to add Imuran if he can't get the Remicade to do its job on its own I have no advice only hugs.

Great to hear he is enjoying his food again!
 
I don't know... at that apptmt, the GI was following up some earlier elevated inflammation levels. So, in discussing the higher levels, he requisitioned more blood tests and said if the levels hadn't come down, his plan would be for Stephen to do another six weeks of exclusive formula (poor Stephen :eek:) to induce remission and, this time, begin on the MTX. But it was a case of 'maybe, depending on results, etc.'. During the same conversation, I also asked about the 5-ASAs and LDN ... so, long story short, we talked about a few drugs but didn't get into great detail about any one drug.

But I did ask your question here on the forum and received lots of responses/info regarding MTX vs Imuran/AZA. Here's the link to that thread (it's probably the thread that made you think of me and Methotrexate...:))

http://www.crohnsforum.com/showthread.php?t=34021
 
No advice, Shelley, just some love :heart:.
I of course agree with keeping on with the formula, cannot dispute the benefit of the nutrition.
I too would be jumping on any drug that may give QOL as I have done w/V...they need to live their lives, end of story. I HATE the amount of childhood time that is stolen from them.:mad2:

I guess naltrexone isn't being considered anymore? I too am turning from it a bit...but am watching the LDN threads too...ah, anolther grey area with no good B/W answer. That means...STABBY TIME :voodoo::voodoo:
 
Julie,

As far as LDN, we feel like we really don't have the time to give it a try. The risk of it not working and him getting worse during that time is not something we want to gamble with at this point. When he was first diagnosed in February his only issue was the peri-anal abscesses. Now we have the stomach cramping and bloody stools and declining energy. His disease has gotten much more aggressive in the past couple of months which I think is going to require something much more agressive than LDN. If we were still in the same place as we were in Feb. we would be giving LDN a go.

We will still carry on with EN but will start introducing foods slowly. He had noodles last night and it was so good seeing him get to eat something!

How are you guys feeling?
 
Thanks for asking, the stupid bug has finally cleared and with that the returning energy we hoped to see didn't happen. Old V is back to the fainting couch as she was prior to using pred for just 6 days which stabilized her for 14 days. What a mind f***that was...

The Florinef isn't doing it, I think now the reason pred fixed her up is it addressed all her issues, i.e., gave her a cortisol boost, expanded blood volume via fluid retention (this is what Florinef does) AND suppressed inflammation.
She needs to have the dysauto more aggressively treated and the IBD along with it. So that's my latest email to The Saint and I suspect his answer shall be to re-start pred which we are ALL ABOUT doing.

Yeah, I kind of feel I don't have the patience to "see" if naltrexone works until she has her life back, ya know?
 
Julie, glad the bug is gone but geez what a buzz kill to hear about V. How is she handling the fact that she felt so good and was able to do so many fun things a couple of weeks ago and is now back to not feeling well? Poor baby girl! I feel so bad for her (and you)!
 
UGH! NO WAY! CURSES! :ymad: So sorry to hear that Julie. I am hoping The Saint has a plan and that it gets her right back on track. Isn't it funny how the very drugs we were so afraid of we now look for, like a junkie looking for a fix. Olivia was a dishrag and having some issues. I couldn't get her in that Remicade chair fast enough.
 
Good luck with the Remicade. I always thought it sounded like a more pleasant option (as much as these things can) than Humira because it is an infusion rather than what sounds like rather sore injections. I hope it does the trick for him!!!
 
Remicade really made an amazing difference for Alex. 6MP wasn't quite putting him over the edge and the doc was fine with keeping him on it while starting Remicade, but I freaked on the studies using both for young boys and said no, I only let him overlap about a week, by then the Remicade had taken effect anyway. I was hesitant to start it, but in hindsight, it was a no brainer. We started after Alex had a 2nd peri-anal fistula. He gained weight rapidly too. No experience with the methotrexate, but Alex did develop antibodies to Remicade within 8 months, so who knows? Keep doing your research and asking questions. :)
 
I was wrong. Apparently, our GI does prescribe MTX and remicade when remicade alone does not work.:eek:

Infusion reactions following re-administration of Remicade
A clinical study in patients with moderate to severe psoriasis was designed to assess the efficacy and safety of long-term maintenance therapy versus re-treatment with an induction regimen of Remicade (maximum of four infusions at 0, 2, 6 and 14 weeks) following disease flare. Patients did not receive any concomitant immunosuppressant therapy. In the re-treatment arm, 4% (8/219) of patients experienced a serious infusion reaction versus < 1% (1/222) on maintenance therapy. The majority of serious infusion reactions occurred during the second infusion at week 2. The interval between the last maintenance dose and the first re-induction dose ranged from 35-231 days. Symptoms included, but were not limited to, dyspnea, urticaria, facial oedema, and hypotension. In all cases, Remicade treatment was discontinued and/or other treatment instituted with complete resolution of signs and symptoms.
Click to expand...

From:
http://www.ema.europa.eu/docs/en_GB...duct_Information/human/000240/WC500050888.pdf


A higher incidence of antibodies to infliximab was observed in Crohn’s disease patients receiving REMICADE after drug-free intervals >16 weeks. In a study of psoriatic arthritis in which 191 patients received 5 mg/kg with or without MTX, antibodies to 16 of 60 infliximab occurred in 15% of patients. The majority of antibody-positive patients had low titers. Patients who were antibody-positive were more likely to have higher rates of clearance, reduced efficacy and to experience an infusion reaction [see Adverse Reactions (6.1)] than were patients who were antibody negative. Antibody development was lower among rheumatoid arthritis and Crohn’s disease patients receiving immunosuppressant therapies such as 6-MP/AZA or MTX.
Click to expand...

from:
http://www.remicade.com/hcp/remicade/assets/hcp_ppi.pdf


I knew I read the 16 weeks somewhere


:rosette1:
 
crohnsinct, right on, whatever works is my fixation now. :eek2:
I refused drugs for her for 3.5 years, now I LOVE PRED and don't care who knows it :tinfoil:
I won't hijack thread, I'll just say THANKS for caring and I'll update on old V's thread when I hear back from The Saint as to next step.

LOVE you girls :ghug:
 
Hey Shelley,

The only reason I can think of for the doc going with Remicade and Metho are the very reasons he gave, plus the consideration of your son's age. The increased risks are associated with Imuran/6mp...

Postmarketing cases of hepatosplenic T-cell lymphoma, a rare type of T-cell lymphoma, have been reported in patients treated with TNF blockers, including REMICADE®. These cases have had a very aggressive disease course and have been fatal. All reported REMICADE® cases have occurred in patients with Crohn’s disease or ulcerative colitis and the majority were in adolescent and young adult males. All of these patients had received treatment with azathioprine or 6-mercaptopurine concomitantly with REMICADE® at or prior to diagnosis. Carefully assess the risks and benefits of treatment with REMICADE®, especially in these patient types.

http://www.remicade.com/hcp/crohns-disease
Click to expand...

Good luck hun...:hug:...bloody awful decisions we should never have to make on behalf of our babies.

Dusty. xxx
 
Mom2oneboy,

My son's Crohn's is severe - no abcesses, and he did respond to prednisone but we had extreme difficulty tapering off.

He started Methotrexate alongside Remicade about 4 weeks ago. The rationale from our GI as well is to prevent him from developing anti-bodies to Remicade so he can continue on this drug (he can't tolerate Humira injections so it is a concern).

He is now 9 days away from having his 4th Remicade infusion and so far, we continue to see improvements in both his condition his general dispositon.

He's had a few mild side effects we're learning to deal with since starting methotrexate, (hoping they will diminish over time), but mostly I've seen a boost to his overall wellness since adding these 3 little pills once weekly to our regimen.

Would I prefer it if he did not have to take any of these drugs? Yes absolutely. But then he would be very very sick - again- and his quality of life would be diminished once more.

In our case (and my son would be the first to tell you) it has proved worth the try so far! I hope it goes as well for you as it has for us.
 
Thanks for sharing! How old is your son? What side effects has he had and is it from the Remicade or the methotrexate? Our doctor mentioned a weekly injection. Sounds like pills would be easier though. I'll have to ask about that.

So glad your son is feeling better! I'm so ready for my little guy to be pain free!
willsmom said:
Mom2oneboy,

My son's Crohn's is severe - no abcesses, and he did respond to prednisone but we had extreme difficulty tapering off.

He started Methotrexate alongside Remicade about 4 weeks ago. The rationale from our GI as well is to prevent him from developing anti-bodies to Remicade so he can continue on this drug (he can't tolerate Humira injections so it is a concern).

He is now 9 days away from having his 4th Remicade infusion and so far, we continue to see improvements in both his condition his general dispositon.

He's had a few mild side effects we're learning to deal with since starting methotrexate, (hoping they will diminish over time), but mostly I've seen a boost to his overall wellness since adding these 3 little pills once weekly to our regimen.

Would I prefer it if he did not have to take any of these drugs? Yes absolutely. But then he would be very very sick - again- and his quality of life would be diminished once more.

In our case (and my son would be the first to tell you) it has proved worth the try so far! I hope it goes as well for you as it has for us.
Click to expand...
 
Will just turned 13 yrs old, and was diagnosed 1 year ago.

He has had no side effects from Remicade, just feels a bit tired after treatment (usually sleeps through most of the infusion as they put benedryl in the pre-meds). He did not start Methotrexate until he finished his loading doses of Remicade.

He's had 4 doses of Methotrexate so far. Twice, it seems to have irritated his gut a bit (gas, bloating a bit of loose stool), headache, also looks a bit pale and some fatigue. Twice he's taken it with no noticeable symptoms at all - who knows? I have been trying to make him drink lots of water 2 days before he is to take it, have a good sleep the night before and eat a good meal...and this seems to help greatly.

Pills are easier for sure do inquire. If your son is in a flare they may have prescribed the injected form of methotrexate initially as he may not be able to properly absorb it otherwise. I have also read the injectable form may cause less intestinal upset.

I know how you feel, I so hope you soon find relief for your son. He deserves it and so do you.
 
imaboveitall said:
crohnsinct, right on, whatever works is my fixation now. :eek2:
I refused drugs for her for 3.5 years, now I LOVE PRED and don't care who knows it :tinfoil:
I won't hijack thread, I'll just say THANKS for caring and I'll update on old V's thread when I hear back from The Saint as to next step.

LOVE you girls :ghug:
Click to expand...

:ylol::ylol:

mom2one hoping the combo is what works for you...so sad our kiddos must delal with this, let alone struggle to find something that works :(
 
Hi there, so sorry to hear EN is not working. I was so hopeful to hear another success story. It worked so well for my son (now 17 yrs old). That being said, he did start on Methotrexate the same week he started EN. He had quite severe disease in his colon/rectum with some small fistulas around his TI and narrowing of the illeum so our GI said he wanted to be fairly aggressive in treatment. He did say that they were suspecting that Remicade might be necessary but that he would start with MTX as it tended to work well with Remicade - he liked to use the two in combination (something like that, I was kind of in a daze at the time with the diagnosis being so new!).
He is still on the MTX (since Sept) and has been in remission since about Dec. - so far we haven't had to move on to anything else. He does a weekly injection - does the needle himself with no problem. GI said that although it's available in pill form, often those with Crohns do not absorb it well enough for it to work so injection is the preferred method. He's doing really well right now, no side effects...
Drugs are scary but if this is keeping his disease at bay and preventing further damage, I'm all for it.
 

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