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MichmackMichmack Posts: 6
edited 22. May 2019, 17:55 in My Child Has Arthritis
I was hoping someone could maybe help! My 4 year old daughter has had her methotrexate upped and since then she has been a different girl. She is very, very moody and angry most of the time and I wondered if it had anything to do with her methotrexate.

Thanks for your help in advance



  • stickywicketstickywicket Posts: 25,994 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello Michelle. Welcome to the forum but I'm sorry to hear about your little girl. I'm not the parent of a child with arthritis but I've had it myself for many years and have been taking methotrexate for the last 11 or so.

    Bearing in mind I'm not a doctor, this isn't something I've heard anyone complaining of as a side-effect of meth. However, your little one is only 4 and, if she had some of the more usual problems (queasiness, headaches etc) I wonder if her mood changes and anger might be a result - or, just a result of the arthritis itself. We all get moody and angry from time to time when this disease interferes with our lives.

    If these changes are enough to worry you, maybe your rheumatology helpline would be a good resource? Or an understanding GP?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • NiknakNiknak Posts: 44
    edited 30. Nov -1, 00:00
    Hi Michelle, well don't even know where to begin so sorry to hear your little girl isn't tolerating the methotrexate. My little girl is also four and on methotrexate she takes it orally medicene. And maybe we can support each other. Nicole is about to switch to the methotrexate being injected. How does your little girl take it what dose is she on. Nicole is on 10 mg which is 5 mil on a spoon.

    The methotrexate makes Nicole very angry too, one minute she can be laughing and the next she will be moody angry violent.
    I asked the consultant who seems to think it does not have this side effect and that it could be frustration of Arthiritus but I beg to differ, as she wasn't like this before she started on this medication. And you also have an angry child on methotrexate. I would live to hear from you and maybe I can share my experiences of my little one and vice versa
    Lots of love chrissy xxxxxx
  • MichmackMichmack Posts: 6
    edited 30. Nov -1, 00:00
    Hi chrissy, Kirstie is also on 10mg and she gets it by injection, she had problems taking it orally.

    I know exactly what you mean about the switch in temperament. I have also spoken to her consultant and the nurse and they both say it must just be her, but I beg to differ!

    It would be really nice to have someon to talk to about this, as no-one is willing to accept that it could be this medication.

    Hope Nicole and yourself are having a good weekend

    Michelle xxx
  • NiknakNiknak Posts: 44
    edited 30. Nov -1, 00:00
    Hi Michelle , finally I have met someone who has a daughter the same age as mine, although sorry under these circumstances. But I mean a daughter same age going through same stuff on same meds. People are great on here and are really supportive, but it's different having a child to make decisions for especially going through so much so young and well basically cos of their age as mums trying to guess half the time how they are and the other half of the time going round the bend worrying as their so small they don't always say what's wrong, trying to judge whether bad behaviour angry out bursts is their personality or the drugs and illness itself. And in my experience the worse Nicole behaves gets angry thats how I judge how she is. I no for a fact it's the medicine because it started when she went on it, and when Nicole doesn't take it like when she's on antibiotics which seems to be quite regularly I don't get angry moody Nicole. Half the time I don't no whether it's because the medicine just makes her feel so crap and that's why she gets mpost angry but it is the methotrexate. Too young to be tolerating all this. I know exactly how u feel with your gorgeous girl, and I bet you walk round like a zombie like me sleep deprived. Where in the world are you I'm in Manchester and I've just changed my consultant. What the doctors forget sometimes is that they are little people and this is alot to be going through at their age. And as mums we do know best too, I refused nic to have entanercept and got a second opinion as I will do anything to control this but I am also weighing up pros and cons quality of
    Life side effects of all this stuff. I have so many questions like the fact you have said kirstie is very active, what joints are effected how long has kirstie had it etc. I hope she is okay, does kirstie get tired alot and alot of coughs colds etc whilst she has been on methotrexate. I bet you have loads of questions xxxx chrissy
  • MichmackMichmack Posts: 6
    edited 30. Nov -1, 00:00
    Hi Chrissy, we're in Dundee. I know exactly how it feels to be a zombie, especially today! Kirstie was up half the night crying as she was in pain and needed her carpool and brufen, it's horrible seeing her like tat and not able to take it away from her! She keeps going over on her ankle, does your Nicole do this? Kirstie's knees, ankles, feet and neck have been affected. Now when we tell her to ake things easy she say it okay cause she'll just go over on her ankle!

    I worry about long term repercussions with this horrible medicine! Is Nicole at nursery? We were very lucky that the nursery Kirstie attended understood and they were very good with her if and when she became sore while there!

    I wish we knew if there were any other mums who have little ones who are also going through these anger, temper issues!

    Hope Nicole is good today

    Michelle xxx
  • NiknakNiknak Posts: 44
    edited 30. Nov -1, 00:00
    Hi Hun, well Michelle I am a zombie today also, yes I agree I wish some other mums were around to say how the meth affects their little ones.

    So sorry to hear kirstie has all these joints affected. Well Nicole falls alot too. But nic has physio as the physio and consultant say the Arthiritus inflammation effects the balance due to knee being swollen and effected by Arthiritus . Nic has physio and goes in hydro pool to try and strengthen her knee to stop the falling over. Does kirstie have physio

    Problem is they want to run about like they're friends and I find Nicole will push herself even in pain so she can join in. It upsets me so much

    Nursery are good now cos I stuck a rocket up their backsides after nic hurt herself. Kirstie should have a health plan in school done by SENCO which basically puts everything in place to make their life easier whilst allowing for their illness and not treating them differently.

    My occupational therapist for nic has been to school, Nicole gets to sit on a chair instead of carpet cos of her joints but they have other kids sat on chairs too so she doesn't feel different
    They have also been told to pace her day as she gets tired and to give her joints a break so basically stop her running round so much, they do this by bringing little groups of nursery kids in with nic at different points of day to read a story with them or different activity making sure she doesn't feel different hence other kids coming in
    Nursery have made all the kids feeling charts so they know how nic feels as she won't say
    They do the waket shaky which is basically some of nics physio with all the kids so nic can have a stretch
    They are good now but they haven't always been I pushed for it
    The health Plan is crucial especially due to methotrexate, every member of staff at school now no about her should they come in contact so they are aware of her needs
    Nic also has extra supervision due to her falling over alot but Like I said I fought for this, because I had the attitude that oh she looks fine kids don't get this.
    The meds scare the he'll out of me, but my consultant said he sleeps easy in his bed giving it her and that nic is screened with her bloods etc so they could stop anything happening.
    Hope you have a good day and a decent sleep. Thing is kids seem resilient it's us that worry.
    Hear whenever you need me chrissy xxxx
  • MichmackMichmack Posts: 6
    edited 30. Nov -1, 00:00
    Hi Chrissy

    I didn't know about the health plan or SENCO. Kirstie is going to school in August, so I'll have to ask about that. She used to get hydro and physio, but that all stopped at the end of last year! We see the consultant in a couple of weeks, so I'll be asking about that too!

    Hope you have a good day

  • NiknakNiknak Posts: 44
    edited 30. Nov -1, 00:00
    Hi Michelle, I didn't know about the health plan school stuff, my sister is SENCO in a different school so she informed me.
    If you need any help or advice with school stuff I'm here if you need me
    Chrissy x
  • varanandyvaranandy Posts: 2
    edited 30. Nov -1, 00:00
    Methotrexate has been shown to be safe for long-term use in most children, but it is still usually tapered off and stopped about 1 year.
  • arfaitisarfaitis Posts: 155
    edited 30. Nov -1, 00:00
    Sorry to hear about your children with this dreaded Arthur, I have been a sufferer for 40 + years.
    I have taken Methotrexate for 13 years, and I have found with me it makes me lethargic and tired on the day I take it, or the day after.
    But possibly your youngsters can be in pain without telling you, I know it made me hard to live with.
    Keep giving your love and cuddles, especially when they are low.

  • HarperHarper Posts: 1
    edited 30. Nov -1, 00:00
    Michmack - I see that it's been 5 years since you posted your question. Not sure if your daughter is still on Methotrexate or not, or if you've found info to assist you in understanding your questions in the last 5 years.
    I just wanted to let you know in answer to your question - YES, Methotrexate can make children and adults angry. It may not have the same effect on all people who use the drug. However, that should not discount your/your daughters experience.
    I am on Methotrexate and have had the same experience. Yet as an adult, I am able to recognize this difference and take a break from the situation. Children aren't quite as adept at controlling their outbursts. As an adult on this medication, it takes a few minutes before I am able to recognised whats going on, and redirect or remove my self from the situation. I feel for both you and your daughter.
    I haven't read through all the associated posts. I suspect that somewhere it will be discussed as a side effect that caused a difficult choice to stay on or discontinue the medication. Either way, I am guessing it was a difficult decision.
    At this point in time the benefits for me outweigh that particular side effect. I am sure there will come a day where that difficult decision is mine to make also.
    Remember this med was developed as a chemotherapy drug, which kills not only the diseased cells, but also the healthy cells as well.
  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Hello Harper and welcome to the forums from the moderation team.

    I am sorry to hear that MTX makes you feel angry at times; at least you are adult enough to recognise and take a break from the situation. As you quite rightly point out children might not have developed those skills yet and any ‘illness’ can result in frustration and anger in someone who is too young to understand.

    If you have any problems using the boards please do not hesitate to contact one of us by personal message.

    I look forward to seeing you posting in future.

    Best wishes

  • Proudmummy1983Proudmummy1983 Posts: 1
    edited 30. Nov -1, 00:00
    Hi sweetheart, I'm so sorry to hear that your little one seems to be having side effects. It's such a strong drug to give to children. My daughter is 15, we had to fight the system for 3years and after going to 5doctors and 3 hospitals they finally confirmed that our jemma did indeed have active arthritis after claims that she was putting it on! Shes now on Methotrexate injections but, her liver levels keep on showing abnormal numbers, since had a phone call to stop them AGAIN. She keeps on gagging, any kind of smell (make up, breakfast etc makes her feel sick... apparently this is normal.

    I really hope your little one is doing ok, and that you've managed to get this sorted out sweetie. Xx
  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Welcome to the forum Proudmummy1983 and thank you for sharing your experience with your daughter on here. You've clearly had a terrible time battling for her to be taken seriously. I'm glad to hear she is receiving treatment now. It sounds as though you've probably already done so, but have you discussed the side effects she's experiencing with her consultant?

    best wishes,

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