Need advice on Remicade and Methotrexate

[Mom2oneboy]

My son's doctor is recommending he start Remicade. He's also encouraging us to use methotrexate along with it in hopes of it helping him not produce antibodies against the Remicade.

Are any of you using these two drugs together? Are there additional side effects or risks that we should consider?

Thanks for you input!

 

[Dave G]

I start Remi Friday (1st dose)...and continue weekly Metho shots. Doc's want both until I am at full Remi dosage (3rd remi dose). They didn't say it was for the reactions to Remi, only to keep up the meds while the Remi hits full strength. But, of course, my teachings in the Forum again go well beyond what the doc's provide. I've since read your comment in other articles also.

No additional side effects or risks were mentioned to me by doc's nor have I read of any...yet...

I'll try and remember to let you know how it goes for me being on both for a couple months...

 

[Mom2oneboy]

Thanks so much Dave! Would love to get your feedback. Good luck with the Remi....hope it does the job for you.

 

[Fabi]

My son's doctor is recommending he start Remicade. He's also encouraging us to use methotrexate along with it in hopes of it helping him not produce antibodies against the Remicade.

Are any of you using these two drugs together? Are there additional side effects or risks that we should consider?

Thanks for you input!

My 8 yr old will be starting Remicade but I don't remember anything about Methotrexate...I will ask our doc.
Please let me know when he starts and how it goes.
Is he on Prednisone?

 

[Dave G]

Started Remi last Friday - no issues/reactions (but have read in Forum that #2 and 3 infusions have highest risk for reactions).

Continued with my weekly Metho shots (Monday).

No major issues to report so far. A twinge or 2 in stomach, slightly dry throat, active dreams, are all I've really experienced...

Do have to say though the Remi really gave me energy boost...drug like. I know, I know, Remi is a drug. But Metho just makes me very fatigued for 2 days and just ok feeling for the 5 days before taking shot again.

My reactions to Metho make sense as 80-90% of the drug leaves your body with-in 1st 48 hrs (on the manufacturers drug info sheet). Thats also why my liver data is perfect even with me drinking beer/wine on all days except day before and 2 days after shot.

back to Remi...

So far Remi has been like drinking a energy drink (Red Bull or 5-hour energy shot). Quite nice actually and the wife surely doesn't mind my not sitting in front of TV most nights (which I have while on Metho past 3 months)...I cleaned the garage, cleaned the house, did dishes and laundry, went for walks...from Sat through Monday till I took my Metho shot.

Have others experienced this energy boost after Remi?

I could get used to this and I know my wife of 25 years certainly could too!...if you know what I mean...

I'll let ya know when/if energy level goes away or diminishes...but at least the initial reactions are good energy/feelings.

 

[kllyeve]

Dave - I get a liitle energy boost with the Remicade as well especially the first day after and again once the couple of flu like days end -day2and 3 after infusion.

 

[PsychoJane]

I have been using in conjunction with humira only for a few months. The idea is the same, to enhance the anti-TNF effectiveness. My GI was saying it is safer to use methotrexate than AZA or 6MP especially with young male. As far as side effect goes, I mostly experienced tiredness... like I would never feel like I had my normal level of energy. Infections will be to be taken seriously as they evolve faster. Normally he will have to get frequent blood monitoring for the first month. Like every two weeks for a while, then every months and then every 3 months mainly to check the liver counts. Since your son is 10 this won't be an issue but normally, alcohol needs to be avoid (max 3 conso./week). Also, it's important to know that there are a lot of medical interaction with the methotrexate. Always make sure if an antibiotic is prescribed that it won't infer with the methotrexate as taking the antibio can lead to a higher concentration of MTX in the blood so it's good to know it. Doctors are not always aware of the incompatibilities so just check them carefully with the pharmacist when new drugs have to be taken.

 

[jmckinley]

Mom2oneboy,

Wondering if you started the methotrexate with the Remicade and how it is going. My son is 14 and we have just been put on the same regimen. Just took the first metho dose today and anxious to see how it will affect him.

 

[Dave G]

FYI - I'm 48, male, recent diagnose of crohns. One of the few with no symtoms (good - no pain, bad - don't know if meds are working or not until next MRI-E to ck for inflammation...lost accending colon cause I didn't know I had an issue).

Been on Metho for past 5 months-ish and just started Remi. Had 2nd infusion last Fri...no reactions during infusion. Post infusion developed 1 small hive right near injection sight and started sore throat 2 days after infusion. Hive is almost completely gone and a Halls cough drop tends to the sore throat. Take Metho shot tonight. No drinking alc for next 48 hrs for body to naturally expel >80% of the Metho - liver working overtime during this period.

Metho always made me feel fatigued the entire next day. I do go to work (desk job), but its tiring.

I give myself the shot in the roll of my stomach and have found that to be least painful spot. I use a moles as targets (near mole not on mole). As you clean the spot for the injection, its sometimes hard to remember the spot...especially after numerous shots.

I also stand up after shot to kind of let things move around a bit. I found that just sitting after shot made it feel more concentrated and "different" feeling. Standing helps this...

I inject 45 min before going to bed. That way any stomach issues or negative reactions occur during sleep. I did stay up after my 1st and 2nd dose just to make sure nothing "bad" happened...and it didn't so now I go straight off to bed a few min after taking shots.

So far so good using Metho and Remi at same time...blood work good...health good.

As stated everywhere in the Forum, no 2 people react the same...its trial and error for everything we do and take. Let the blood work, pain, MRI-E tell you what is good and what is bad.

Good luck! Don't worry too much - trial and error...trial and error...

 

[Mom2oneboy]

Dave, thanks so much for the useful information. I hope the Remi/Metho combo continues to work well for you!

My son will have his first metho shot on Wednesday and for now his doctor wants to hold off the Remi. He has really stabalized and we continue with the enteral nutrition. I'm not going to lie, I'm dreading Wednesday. The thought of injecting my 10yr old with that stuff just sickens me. He's never taken much medication. Was only on antibiotics maybe 3 times prior to the Crohn's and has never even had a flu shot. I'm just hoping he doesn't experience any side affects. He gets the shot around 12:30 in the afternoon so we will be able to keep a close eye on him. After that we will give them to him right before bedtime.

Thanks again for your feedback!