Starting Methotrexate soon ...

parentnj

parentnj

Joined
Dec 19, 2012
Messages
121
My 13 yr old son will be starting methotrexate soon. He is taking 20MG of Pred right now and is symptom free after bouncing it back up when the taper failed ... Pentasa didn't keep him in remission. The doctor Px'd Zofran and Folic Acid as well. I'd appreciate any tips or advice or things to watch out for. Thank you all in advance.
 
We were told to give the MTX(my son takes the pill form) on Friday so if there were any side effects then he would have to weekend to recoup. But as I've previously stated no side effects for us. C takes 10 pills and GI said we could split them 5 in morning then 5 in the evening, we did for awhile but now he doesn't. Good luck, with the MTX, hope it works well for your son!
 
Started MTX last night (25MG Oral). Alec woke up feeling great this morning ... fingers crossed, knock wood, etc, etc, etc.
 
All Crohn's symptoms went away when Jack was on Methotrexate unfortunately he had a reaction, started coughing that deep barking cough shortly after starting and continued the whole few months he was on it and stopped within 2 weeks of stopping the metho. I guess one of the rare side effects is lung issues.
It worked really well on the Crohn's though. Hope it gets it under control quickly and keeps it under control
 
Glad to hear the methotrexate dose went well. My son also takes it and we do it on the weekends. Be sure he is taking folic acid.
 
He is taking a daily does of Folic Acid. If his blood work is OK this week, we will continue with the MTX and start tapering the Pred. Fingers crossed, knock wood, etc, etc, etc,
 
blood work was good, Prednisone tapering begins today along with Alec's second dose of MTX. Fingers crossed, knock wood, etc, etc.
 
I was on injections and ok after a day or two.
Stayed on it for four years until the dose went up and then the cough started and my hair started falling out. Can't say it was any better than Mecaptapurine so swopped back onto that as MTX is a bit of sledgehammer.
Keep up the folic.
 
Second MTX dose last night. Alec woke up feeling tired but no other side effects. He ate a healthy breakfast and hopes they show a movie in one of his classes so he can take a nap. Knock wood, crossed fingers, etc, etc
 
It's also possible that it is caused from the methotrexate. I got awful headaches in the beginning while on Methotrexate
 
Thanks KWalker ... Alec's MTX dosing is done Wednesday night (tonight) so his last dose was a week ago. You can never be sure what is causing these effects but his symptoms are the same as when he tried tapering last time. Headache was gone this morning but he has some lingering nausea that is slowly going away. He managed to eat two English muffins and a glass of milk this morning and was able to get his 10MG of Prednisone down (not easy when the stomach is a queasy). Fingers crossed that we are back on track. Waiting for the doctor to review an EKG from yesterday to give us the go ahead for his MTX dose tonight.
 
Alec took his MTX dose tonight instead of yesterday ... the cardiology computer system was down and they couldn't read his ECG yesterday ... it's always something. He is taking Tylenol as he feels a headache coming on. uh oh. hopefully all will be good in the morning.
 
Oh no, I hope the tylenol catches the headache before it gets out of hand and he is feeling good in the morning!
 
we caught the headache in time ... whew ... Alec went to bed. I keep reminding him to drink lots of water...
 
so Alec played baseball Sunday ... he got a hit, made a couple of nice plays but missed a sign and botched a pick off and a run scored. He was miserable about it. But all I could think about was how great it was that he could play baseball at all.
 
I know what you mean, C used to to be heavily involved in school, rec and travel baseball there wasn't a weekend we weren't at a tournament. The joint pain and CD issues derailed his playing for quite awhile and I think he has missed it. Now, his team has tried to get him to come back out and play but he has his drivers license so baseball hasn't definitely fell off the radar!
 
Parentnj, My son always had headache with prednisone.
We will be starting Methotrexate soon. I want to do pills, but GI likes injection.
 
Bummer - Alec strained his shoulder pitching in the cold weather yesterday ... looks like he will be DH'ing for the next couple of weeks. On the bright side the prednisone taper is going well and the MTX seems to be working ... no symptoms right now. (knock wood, fingers crossed, etc, etc)
 
OK, first weird side effect ... red rash that is sensitive to the touch on his forearm ... MTX? Prednisone Taper? something else?
 
Sorry parentnj, we haven't dealt with a rash of any sort. Welcome to the forum, Obi Wan Crohnobi!!!
 
Skin rash solved ... he iced his arm down after pitching Saturday and the ice pack shoulder/ arm sling caused some minor frost bite! nothing to worry about.
 
The disease is back ... joint pain, nausea (can't eat) and stools are more frequent and softer. Waiting to hear back from the doctor ... no prednisone for a week and we are back to square one. :(
 
Seeing GI tomorrow afternoon ... he is very responsive. Sent an email at 7am this morning and was scheduled by 9am. Liquid diet today ... so far 1000 calories down. He has no pain and no BMs at all so far today. Nausea has subsided but still no appetite. Alec is napping now ... real test will be whether he wants to go to his baseball game tonight. Thanks so much for your kind thoughts.
 
Hope he feels better and the nap does the trick and he will feel well enough to go to his game tonight. Glad the GI was quick to get him in.
Jack has a game tonight as well, not looking forward to this one as much as the ones last week as temperature has changed from 70's down to 40's with high winds. Hopefully the winds will be blowing the right direction for us and carry the ball farther into the outfield.
 
Its 75 degrees in NJ today! We played two games over the weekend in 30 and 40 degree weather. I hope he feels better because its just such a beautiful day to be outside.
 
no baseball for Alec tonight, he is not up to it. I am hoping that his symptoms are really from his prednisone tapering and not the disease. I have seen other folks who posted here that they had the same issues once they were off Pred for a few days ... and that the symptoms resolved. One can only hope ... we had bloodwork today so that will probably give a good clue one way or another I hope!
 
mucous in a mushy stool last night .. still can't eat. He is on a liquid diet so at least he is getting his calories. what a bummer ... one day he is playing baseball and doing great ...the next day he can't eat. doctor appointment this afternoon. I think we are going to Remicade.
 
Will your GI add Remicade to your meds or is it instead of mtx? The anti Tnf drugs do wonders for many. Good luck this afternoon :)
 
How long has he been on the MTX? And I'm sorry I've read so many posts today but hasn't he just recently finished the pred? I'm just wondering as it can take some time for the MTX to really start working and if he has been on Pred then it could've been holding back the symtpoms.

I do hope the appt goes well and he can get some relief! The Remicade worked really quickly initially for my son, his issues started one we were done with the loading doses and were trying to make it out the whole 8 weeks.
 
We are back on the pred at 10mg and Alec is feeling much better. We are joining the Remicade club as soon as my insurance situation is cleared (wouldn't you know I am starting a new job in two weeks and our insurance is going to change). Doctor dropped MTX dosage to 12.5mg which is the dosage he uses in conjunction with Remicade. Hopefully this will be the solution.
 
haven't been online in a while ... new job has been busy. Insurance worked out, new employer was great in helping getting sign up expedited (just 2 days instead of 3 - 4 weeks). Alec has his first remicade infusion Monday afternoon ... I will be working from the hospital. Praying this works.
 
WEll, the first remicade infusion was comepletely uneventful (knock wood). Alec didn't mind the IV, the nurses were great. He watched his iPad the whole time and it was over before we knew it. Docter is tapering off the prednisone immediately. 5MG this week and done next week. He will have one whole week without Pred before his next infusion ... fingers crossed and praying the disease stays quiet. We haven't been able to last more than a couple of days without pred.
 
How is he doing?

FWIW: Our daughter had to do an extremely slow taper off prednisone while waiting for the Remicade to take over totally. Every time we stepped down, symptoms came back so we went up again. Patience is a virtue with this disease huh? In the end it was determined Remicade couldn't do all the heavy lifting so we added EN...now she is on Mtx with Remi but Mtx was added for psoriasis.

Clash's doc had a really awesome explanation why Mtx helps Remicade work (aside from preventing antibodies etc)...something about where and how they both attack the CD.
 
Alec is feeling great right now ... down to 5mg of pred. doing the mtx and one week from his second infusion of remicade. His joint pain has been gone since his first infusion. He felt so good he pitched a complete game 3 hitter Thursday night and got 2 hits as well. knock wood this keeps up. for one week he is feeling like his old self ... priceless.
 
That's awesome! It is so great to see them enjoying their regular activities and being a kid again! One year in my daughter started joint pain but we aren't sure if it is from the psoriasis or CD...either way adding the Mtx to the mix took care of it.

Hope it all continues on the upswing for you guys!
 
O.K. You know I am old right?! Surely Farmwife has filled you in on my senility. Truth is I can't remember where it was and was hoping Clash would see the post and tell us. It definitely wasn't on this thread. Maybe a p.m.? She gets lots of lengthy explanations and picture drawing from her GI. I am jealous.
 
I'm jealous too!! I PM'd her and she wrote:

Clash:
He drew out a line graph and the line across had many valleys and peaks(like an erratic heartbeat or a lie detector test). The peaks were all things causing inflammation in the GI with CD. The tallest peak was tnf and he explained that Remicade was a really great drug because it brought down this tallest peak and in most his patients with CD that did the trick because all the other peaks in the line were much smaller. Then he drew a graph where tnf was still the tallest peak bit others were near comparable in height. He explained that several other cytokines/mqcrophages etc were also culprits in causing inflammation. In most patient though, the tnf is the main one but in some cases the others players are quite strong too and so just hitting the tallest peak with Remicade doesnt cut it you have to hit the other peaks with an immuno suppressant because their role is almost as big as tnf in some people.

Thank you Clash!!
 

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