Methotrexate Nightmare

Kristen Toronto with dogIntroduction:

My name is Kristen, I have had Ulcerative Colitis for 21 years and have never really got it under control. Ive tried everything from ASA to prednisone (ew) to Remicade.

Some more about me:

Im from Toronto, Ontario Canada. I am a psychology major in university and am working on completing my doctorate. The best thing in my life is my dog!

Methotrexate Nightmare

I have had UC for 21 years, being diagnosed at the rare age of 2. My struggle since then has been full of ups and downs, mostly downs. I am currently on Remicade and hyrdo-cortisone infusions every 6 weeks and was taking Imuran until 4 weeks ago. I was noticing horrible debilitating migraines, keeping me from school and other responsibilities. I tried everything, I went to a neurologist and got a whole bunch of tests done which all came back negative. I argued and argued with my doctors, telling them I was sure it was the imuran causing this as the migraines started shortly after I began this medication. Finally they agreed to take me off of it for a couple weeks to see what happened. ITS A MIRACLE! My headaches were gone, however my colitis was starting to get angry again. So we moved on to the next problem, now what do I take? My doctor suggested I try methotrexate and see if it helps. I was fearful to start such a damaging and scary medication that is commonly used for chemotherapy, however I agreed to try anything.

And so the next battle began.

I take 10.5 MG of methotrexate once a week and OMG does it make you feel crappy for a couple days. I took it Saturday night and the side effects began only a few hours after i took it. The worst being severe nausea, sometimes to the point of gagging and dry heaving, once in a while vomiting if it got intense. I also experienced a hangover type of headache on Sunday morning, and extreme fatigue for a couple of days. Just a general feeling of crap (however still an improvement to feel like crap 2 days out of the week instead of the 7 days i was dealing with before). A couple weeks into the methotrexate journey I bit my cheek and the next day i looked in my mouth, wondering why it was so painful. To my surprise the wound was covered in kankers and ulcerations…YAY (not). I turned to the internet for answers and found this was a rather common side effect, to the drug store i went a purchased a product by Colgate called Peroxyl which is a mouth wash specifically for mouth sores. Worked wonders, for anyone with this problem i suggest keeping a bottle handy. I have been taking methotrexate for about 6 weeks now and I am noticing the nausea is creeping further and further into the week. Lasting up to 4 days. It is really unpleasent to gag and dry heave all day, and I am unable to take gravol most of the time as it puts me right to sleep. I have tried ginger root pills which calm the nausea but don’t work for very long. I am wondering if there is anyone else out there with this problem, or even if any of you lovely UC’ers have any suggestions for medications or remedies for SEVERE nausea.
Thanks guys!

All of that being said, it should be noted the methotrexate and remicade are working very well on improving my Colitis, less symptoms than ever.

Medications:

Currently taking Methotrexate, Remicade, Hydro-Cortisone. Also taking several vitamins because my insides have trouble absorbing nutrients; Multi-vitamin, B12, folic acid and iron.

written by Kristen

submitted in the colitis venting area

Tags: methotrexate

6 Responses to “Methotrexate Nightmare”

  1. Jen From UK
    JenMay 16, 2013 at 1:01 pm #

    I love your dog! Wow you’ve been through it!!! UC at 2… I can’t imagine. I have just been prescribed metaclopramide and cyclizine for Aza nausea and its helping keep me out of hospital and I hope to stagger my way round a charity 5k on Sunday. Glad your colitis symptoms are beginning to behave and many sympathies re the nausea. It sucks xxx

  2. Paul WilloughbyMay 16, 2013 at 1:45 pm #

    Were you taking the methotrexate orally? I was told by my physician that UC people need to inject it subcutaneously because it can mess up your stomach and cause diarrhea if you take the pills. The pills are for RA people. I did the injections myself for 24 weeks. It helped a lot.

    Paul

  3. bevMay 16, 2013 at 2:27 pm #

    Hi Kristen…another fellow Canadian! TO is my hometown.

    Since you were 2 years old? Wow. That’s a long ass time to have had UC, Kristen.

    Your story surprises me NOT!! That is such a harsh drug. None of the drugs are wonder drugs to me. I do not believe in meds to treat UC.

    May I just ask…were you on antibiotics at all as a very young babe, before you were diagnosed, do you know?

    I can understand why you agreed to try anything. UC is debilitating. It is an awful condition to have to be sure. I’ve had it for 15 years myself, and it has progressed to pancolitis.

    I am not on any meds. My poor body hates them. I take a good probiotic (first thing in the am, on an empty stomach with water, and then don’t eat for at least half an hour. They can t=really do their job, that way). I also take fermented L-glutamine powder, again on an empty stomach, about an hour before lunch, which took the bleeding away because it actually HEALS the mucosa of the colon! Yep, that’s right. None of those drugs will do that. They just kill your immune system. Nice. We don’t have cancer, but they want to treat us with cancer drugs? This always still floors me. Talk about overkill…

    To me, nausea is a sign that something is SO WRONG. I was nauseated for 14 years, and was told that it was the UC. BULL***! It was the meds that I was on…that my body hated and was rejecting! As soon as I stopped them, after the probiotic and L-glutamine put me into remission, I felt GREAT again! No more nausea…and for the first time in 14 years, I had an appetite!

    Try those two things as soon as possible. Take them on an empty stomach because that matters. You don`t HAVE to stop the meds if you are too scared to…but you just might find that you will want to. Remember, you won`t die if you stop taking meds. I used to think that the doctors knew everything…not any more.

    Bev
    :)

  4. PeterNZMay 16, 2013 at 3:12 pm #

    Yeah mate,
    Same for me. Methotrexate pretty much put me in bed for 2 days after taking it. After couple of months I just had to stop taking it. It seemed to keep the colitis at bay though, but could have been coincidence. I’m gonna try it again though at a lower dose as I have been on the pred way too long now. Make sure you have regular blood tests if you take it.
    I find drinking wine daily helps.
    Good luck to you,
    Peter

  5. shellyMay 17, 2013 at 4:30 pm #

    Hi Kristen,
    I’m from Toronto and my daughter was diagnosed with UC at a very young age as well. It is horrifying but I’m happy to see you’re working on your phd and have made it through it all. I don’t know much about mtx other than according to the cochraine library review of literature (carried out by my daughter’s current and quite likely your former GI) mtx has not really been proven to be effective in UC. Was the remi on it’s own not working well enough? I suppose it could have bolstered it’s effect. And, there was a study done by some ped GIs in Rome, Italy on mtx and UC and they found some benefit but it was transient (we actually lived there for a while and were treated by this team). I’m happy to hear that you’ve managed to hang on to your colon for all of these years. My daughter is not likely to be as lucky – we have tried every supplement, diet and almost every med under the sun and if the next things don’t work her colon is going to be removed. I hope you find something for the nausea. I know in Israel they rx medical marijuana to children undergoing cancer treatment – perhaps you could medicate that way (it’s been shown to help treat IBD too depending on how you consume it). Just a thought. Good luck to you!

  6. Kristen Leigh CotterMay 18, 2013 at 7:43 pm #

    Hey guys!
    Thanks so much for your stories and advice,
    I honestly don’t know if I had antibiotics pre diagnoses, I was so young I really don’t remeber much. Just stories from my mom about how horrifying it was! I think I will try probiotics, any particular brand you like more than others? I was on just remicade for a while, it helped for a couple months then shit hit the fan again (no pun intended, lol). The methotrexate honestly is helping, a lot less symptoms than ususal, which is nice. However the nausea is horrible, I am taking pills but I think I will be switching to injectable since that is supposed to reduce the side effects.
    I really appriciate you guys taking the time to give me your advice! It’s nice to hear from fellow uc’ers.

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