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Anyone using Methotrexate???

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Ulcerative Colitis
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Posted 4/22/2015 8:06 PM (GMT 0)
Hi everyone,

We are being told by our doctors that its time to move our son onto the next level of UC medicine. After having tried and failed various 5ASAs over the last two years - including one which landed him in the hospital because of a severe allergic reaction - the doctors have now suggested using methotrexate. I was hoping to hear from others out there that have tried this medicine and can tell me their experience with it so we can know what to expect. I understand its used more for crohn's - I've read some on that board - was hoping for more direct experience related to UC.

He is currently on prednisone until we start the methotrexate and while we wait for it to kick in - expected to take between 4 - 6 weeks. We tried Uceris but no luck with it.

FYI: I have read of one study currently being conducted on the methotrexate and its use for UC but looks like the results are not yet available.

https://clinicaltrials.gov/ct2/show/study/NCT01393405?term=ulcerative+colitis&recr=open&rank=65&show_locs=Y


Thanks as always for your input.
Posted 4/22/2015 8:38 PM (GMT 0)
As you said Methotrexate isn't common for uc. If your son has failed the 5ASAs, then immunosuppressive medications are next (Imuran, aza, 6mp). Biologics afterwards (remicade, humira, simponi). Methotrexate is added to a biologic (in the few cases I've seen).

Seems like an odd move from 5ASA to Methotrexate.

This post on the forum today references methotrexate: https://www.healingwell.com/community/default.aspx?f=38&m=3388901
Posted 4/22/2015 8:43 PM (GMT 0)
I took it for a while when I was on remicade. I think it's okay to try but it's not really used for UC and I've heard the results with UC aren't all that great or they are unknown... I am surprised the doctor wouldn't go for something that has more clinical results like remicade. If i were on prednisone and miserable (because i hate pred and the side effects), I'd rather go for a winner than a LOW maybe...

Even 6mp/imuran are much better options. idea
Posted 4/22/2015 9:33 PM (GMT 0)
As it was explained to us, they don't want him taking 6mp because if he needs to step up to the biologics there is an increased risk of cancer (can't remember what kind) with the combination of 6mp + a biologic for BOYS (only) as compared to if you go from MTX to a biologic.

So this hospital's practice (as I understand it) is to give MTX as a first option (after failing 5ASAs) - really hope it works - if not go 6mp - and then really hope that works - and worst case - go to the biologics from there - and really hope that works for the UC and pray that it doesn't cause the cancer issue because of the combination.

Very frustrating, very scary. I'm at a loss.
Posted 4/22/2015 9:55 PM (GMT 0)
Here's what the fda says:
The U.S. Food and Drug Administration (FDA) is informing the public that it continues to receive reports of a rare cancer of white blood cells (known as Hepatosplenic T-Cell Lymphoma or HSTCL), primarily in adolescents and young adults being treated for Crohn’s disease and ulcerative colitis with medicines known as tumor necrosis factor (TNF) blockers, as well as with azathioprine, and/or mercaptopurine.www.fda.gov/Drugs/DrugSafety/ucm250913.htm

It's hardly a sure thing, just a small increased risk.
Posted 4/22/2015 9:55 PM (GMT 0)
Please don't :(

I was recently lucky enough to meet a group of people with IBD, and when I said my doctors had wanted to put me on methotrexate, there was a collective groan around the room, with people offering their stories about the horrible things MTX had done to their bodies. It was really sad.

I know you're in a really tough situation, but the simple fact is MTX doesn't work for UC, and the side effects are common and severe. It would be horrible to put your son through gruelling treatment for no reason, just because of a very tiny, hypothetical risk
Posted 4/22/2015 10:08 PM (GMT 0)
MTX + remicade caused me to get a rare bug that turned into septic shock. That is not fun either. None of it is "safe" from possibilities but all have LOW rates of complications. If you're going to do something, at least do something with a good track record for solving the problem.
Posted 4/23/2015 4:25 AM (GMT 0)
I recently refused MTX on the basis that there are no favourable study results available for its use with UC. The doctors listened and I was put on Remicade instead.
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