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calling all methotrexate users

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Crohn's Disease
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Posted 1/22/2010 4:20 AM (GMT 0)
Hello. Recap... My 16 year old daughter is about to start Methotrexate next month, 6 mp hasn't worked- tried it for a year. 2 flares requiring Prednisone recently. The doc says not to worry adn that there is no evidence that the dosage of MTX for Crohn's doesn't have the worry of infertility.

I would LOVE any and all info from people who have used the drug- good or bad to help calm my nerves as well as give her much needed support.

Thanks!!
Jen
Posted 1/22/2010 4:51 AM (GMT 0)
Hi Jen,

I'm on methotrexate for arthritis (I find it helps somewhat with Crohn's but still flare occasionally while on it). None of my doctor's ever mentioned a risk of infertility with mtxafter reading your post I did a quick google search and found an article that says the risk is low. What I was told was that there's a risk of birth defects if I become pregnant while on mtx .... if I decide that I want to have a baby, I'll need to plan for it and be off mtx for a bit before trying to get pregnant (not sure of the exact timeframe).

I've had very few side effects with mtx -- some queasiness, but if I take it at night, I sleep it off and feel fine in the morning. Your daughter's doctor should prescribe folic acid along with mtx, since mtx depletes folic acid -- when I first started taking mtx i was getting mouth ulcers, but we found that by increasing folic acid from 1 to 2 mgs, that side effect disappeared. Do you know if your daughter will take oral mtx or injectable? I had been taking oral, but switched to injectable a few weeks ago. I was nervous about self-injecting, but it's not bad at all.

Hope this helps and that the mtx helps get your daughter's crohn's under control.

Melissa
Posted 1/22/2010 8:56 AM (GMT 0)
Hi there, I was put on methotrexate for Crohn's and arthritis when I was 15.....I'm 23 in a couple of weeks! Methotrexate works great for me, it did take a couple of months to notice a significant difference but it was able to get me back to school etc. The side-effects were bad for the first month so just make sure she doesn't have anything important to do the next day, keeps hydrated and takes the dose at night like Melissa said so that you sleep through the majority of the side-effects.
The first side-effects I had were some visual disturbances (seeing colours and shadows - this only lasted about an hour though) and tiredness and nausea. After trying a few nausea meds I found prochlorperazine seemed to really kick it into touch. Now I rarely get side-effects, the only noticeable one is that I sleep heavier the night I take it and am a zombie for the first few hours the next day! I was on tablets for the first 6 and a half years and been on the injection form since - I think theres definitely been a difference with side-effects I hardly ever have to take nausea meds now.
This is my 8th year on it and during that time I have completed GCSE's, A levels and am now at university, I have also been able to have jobs, get back into sports and live as a completely 'normal' teenager and now am a typical student lol. Hopefully this will be the drug that gives her her life back!
Posted 1/25/2010 3:52 AM (GMT 0)
My daughter was on it for a few months. It did seem to help for a time, but then she developed nausea and vomiting after taking it, which eventually moved to before having the shot b/c she was anticipating it after. The doc put her on anti-nausea meds but it was too late and we had to stop it altogether. Good luck!
Posted 1/25/2010 11:25 AM (GMT 0)
Hi Jen,

I can't comment about the mtx. I do have a co-worker who has a daughter that's been on it for about a year, and doing well with it. I hope Marie is doing okay now since the recent round of Prednisone. Please keep posting as to how she is. 

Tom.

Posted 1/25/2010 5:54 PM (GMT 0)
Hi, my daughter took Methotrexate in the oral form for about 8 months when she was first diagnosed at 11 years old, with success, but then began to get severe nausea and vomiting. We swithed to injections, but that was just as bad. We tried for a few months, but it was too difficult physically and psychologically for her. She began dreading Fridays because she new she would vomit and be fatigued all weekend. She had to stop taking it. The doc did say she would have to stop taking it if she ever became sexually active because it caused birth defects and miscarraiges. She also had to take folic acid. Diana
Posted 1/25/2010 9:36 PM (GMT 0)
Hello,

I was on it for the better part of a year, and found it much much more tolerable than Immuran. I took it at night before bed, and I never had any problems with nausea or anything lie that. I think that having a G E who is willing to get the dose just right is what is all about for this drug...and maybe even this disease. Take your time and build up to the dosage that you will stay at. I never did take folic acid, but I eat a lot of spinach.
Posted 1/25/2010 9:51 PM (GMT 0)
HI i take folic acid with my mtx have been on it for a couple yrs ..hv had no issues that i can think off ...had hysterectomy and im way to old to worry about babies lol so for me this drug has been helpful...lyn
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