Starting methotrexate - concerns

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I'm 17 years old and recently been diagnosed with arthritis. My inflammation and pain was so bad as my doctor at first misdiagnosed me until I had to be hospitalised! My inflammation level was up past 313 so it's still pretty high. It on the way down thanks to steroids, however i'm extremity keen get off these as there wrecking my sleeping pattern and i'm constantly hungry and tired! I'm about to go start 10mg of methotrexate but quite nervous as I know there's some side affects such as sickness and hair loss, plus I have my last exam on Monday and i'm taking the tablets on Friday so i'm really nervous about it messing up my studying! I've already felt kept back as I've had to miss so much school and was I hospital 5 days before my first exam for a week! If anyone has any tips and advice on coping with methotrexate or even arthritis it would be great, trying to come to terms with all of this and exams in three months has left me really shaken up and I still reach points where I just want to give up as I find it so hard to come to terms with some days..sounds quite dramatic I know but some days I can't even dress myself nevermind. Go outside with friends and i'm only 17. Sorry if this is really long just need some people to talk to who get where i'm coming from!

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9 Replies

  • Posted

    Amy, I'm so sorry to hear this, but you aren't alone.  Folic acid, that I'm sure your were also prescribed will help with hair loss and you can ask a professional hair dresser for extra tips.  I, personally, haven't experienced any problems with my hair, I had a friend who did but lost maybe twice what your normally lose in a day, so no affect on her "hair". Also, I feel it's a 3 day process.  If u take it Friday nite before bed..Saturday you will be more tired than normal, sleepy and maybe a bit nauseous.  Eat starches like a baked potato or sandwich, it will help.  Sunday you will feel better, but your energy will drain quickly.  Monday you will be back close to your normal self.  Take it every 7 days or 8 based on your schedule, but never earlier than 7 days.  Hopefully, since you are so young, 4 or 5 months you will be done taking it...good luck to you...
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  • Posted

    Hi ! Have being on methotrexate for almost a year now. The side affects for me are had for the first three days . Headaches , stomach pains , lost of appetite, and nausea. MY arthritis is at a remission for now. I do hate how I am feeling for now. I take 20 mg weekly. Good luck to you and take care.
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  • Posted

    Hi Amy

    My heart goes out to you.it must all seem so scary and overwhelming.

    My advice would be to break it down because looking at it as a whole is too much to take in.

    Firstly the steroids you will be weaned off and although you hate taking them they are actually doing your body the world of good with regards to the arthritis. Look at it as it is kick starting your help with the arthritis and the high dose is short term.

    The methotrexate (MTX) everybody reacts to differently. Some get no side effects at all and those of us who do are here to help you. Use this site if you get side effects and people will give you advice and help you through it. Not everybody gets hair loss 😊😊 I did and bought a fantastic wig for about £30.... Then my hair grew back (it only snapped off in places... No bald patches) and now even though still on Mtx my hair has grown back thicker than before and sometimes I wear my wig for fun!

    Folic acid 6 days a week (prescribed by the doctor, not over the counter) pretty much stopped my side effects. Things like nausea (in my case) are fleeting moments, not all day every day.

    What I'm trying to say is it is scary. But you could be one of the lucky ones who tolerate it really well 😊😊 if you get side effects deal with each one as it comes. Use this forum. There is great advice. Try not (easier said than done) think about what 'may' happen because there's as much chance 'it may not'.

    As I say everybody's journey is different. I'm fine on MTX day but feel yukky the second day and early into the 3rd sometimes.

    As for your studying (well done you) you can only do your best. It may be worth talking with your teacher explaining and they may give you some extra time. If the worst comes to the worst sometimes life throws us a poop card and your health and getting it managed so you have a good quality of life is the most important thing. Studying etc you can always go back to.

    I wish you all the luck on your journey and remember, little steps, day by day and you are not on your own.

    Lots of love

    Lisa

    😊😊☀️ x

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    • Posted

      Hello Lisa,  just to say that I  was going to respond to Amy and then read your reply.  There was nothing left for me to add really as you  said it all so clearly and in a most positive way.  All the best.
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    • Posted

      You are very welcome Amy. It has made me happy that maybe I helped even if a little.

      You should be very proud of yourself that you already found a great resource to help yourself. It took me ages to reach out for any help. That already shows you have inner strength and are already looking to help yourself rather than just giving up. I have a feeling you are going to get through this because you've already taken such a huge step!

      Sending you lots of sunshine thoughts 😊😊☀️☀️☀️ X

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  • Posted

    Amy, with all this said, please keep a positive attitude, don't dream up our side effects and feel bad because you feel "you are supposed to be feeling bad" you may not feel anything at all! A positive mind will help...you can do this! Take care and keep us posted...love & prayers to you!
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