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Thanks guys for all the info!! He did better this week when we split the dose up. We have to contact the doctor to see about dosage increase for this week and are going to talk to them about the folic acid again! Thanks again!!

As of now, the doc wants him to try not to take the folic because the MTX seems to work better with low folic acid levels. They did say if he continues to have side effects they will add it if needed. Starting tomorrow they want him to take a Benadryl before he takes the MTX and we are going...

Ok. Thank you for all the info. He hasn’t taken any folic, so we are going to ask the doctor. Thanks again

How many days after they take it do the symptoms usually last? He took it Saturday afternoon and just came home from class because he felt nauseous and said his heart rate jumped up/fells drained???

Yeah, that want to be adults only when it works in their favor!😂😂 He just took his second dose yesterday and feels like he has had some hot flashes. Can this be a side effect of the MTX?

Or their dads!!😂😂.

Thank you so much for sharing!! He took his first dose of MTX Saturday and did well. It was 15mg, then next week it goes to 20mg and then the next week it will be 25mg. Still fighting with insurance company for the 4 week Stelera, but we got approved thru Johnson & Johnson for one year. New...

That is ridiculous!

Wow! What do they expect you to do for treatment all that time if every 8 weeks isn’t working? The damage could keep getting worse

Got second denial from insurance company on Stelera (every 4 weeks) today. Really don’t understand how they can say it’s not medically necessary!!😡

This is good to know!! He has a full load on Mondays and Wednesdays. The other days is just a few classes. How long do the symptoms last with the oral meds?

Thanks for the info! It’s pills, 2.5mg each. So he is supposed to take 10 once a week. Starting college next week and doesn’t want to take them.( he is really frustrated, since no meds have worked). We are going to ask about the folic acid when we get in touch with doc. Hope your son...

Still waiting to talk to Doc about results, but picked up methotrexate today. He is supposed to take 25 mg once a week. Is this a normal dose? Also, should they take folic acid with this?

Thank you for all the info!! Hopefully we can get to talk to the doctor tomorrow. Just received a letter from insurance company denying his Stelera increase to every 4 weeks!😩

Thanks for the info! I know this is a question for the doctor, but I trust people that have been through this so I’m thinking out loud: If you do the surgery, how do you control the inflammation and damage from coming back if we can’t find a med to work? Any idea on how long they have to stay...

Thank you! This is the second opinion Doc. The first doc wanted to do surgery when it was way smaller..

We are now on our third medication. Rejected Remicade and Humira and we are now trying Stelera. Just got trough levels back and it was around 2.5. He just had his colonoscopy and MRE done and the damage to his Ileum went from 5 cm last year to 15 to 20 cm now. He is having no symptoms and we...

Ok guys, we have taken your recommendation and have an appointment with Dr. Kugathasan at CHOA on December 8th! We are also still trying to take a road trip to CHOP in April. Wanted to ask for the kids on Humira, how often do your docs check the Humira levels? Thanks again for all your help!!

Ok! I’m going to look into that too!! Thank you

We live in South Carolina, but are planning a road trip to CHOP in the spring.. Any recommendations on any place closer?? The only scopes he had was when he was first diagnosed last year. (The colonoscopy never got completed because she had trouble getting it to go around one of the curves in...