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11 year old starting methotrexate?

SussexbytheseaSussexbythesea Posts: 4
edited 24. Jun 2019, 04:57 in My Child Has Arthritis
Hi all, I’m so glad to have found you – have never posted and am hoping for some wise words!

My daughter was first diagnosed with JIA aged 5 after first flare up at 3. We then had many years of one flare up every other year max (controlled w ibuprofen) until she was 9 when both knees swelled up. Since then one knee in particular stays a bit swollen although we have had it drained twice and done all we can in terms of acupuncture, exercise and diet. The consultant says the last MRI showed inflammation was spotted all over the kneecap even tho my daughter doesn’t feel it.

We lucky as it hasn’t stopped her doing sports, dance etc – she says it doesn’t hurt (and she would say if it did!) tho feels a bit stiff and ‘funny’ sometimes. However the consultant is now giving me That Look and saying we need to put her on methotrexate to prevent joint damage. I know that that risk is real but in every other health care situation I’ve had I’ve resisted meds, esp in a situation where there is no pain for goodness sake and ‘wait and see’ seems the no-brainer approach. The acupuncturist, half of my family and a young woman in her early 20s I met randomly who has RA all say ‘don’t’ while the US side say ‘do’ and I’m torn.
Does anyone have any thoughts? Its my understanding that once on the big drug you’re on it for life – how would she ever know she was OK to come off? At this point I have no idea what her knees are supposed to look like – maybe they are just knobbly like mine(?!) Can I insist on another MRI or is that a bad thing to do? Probably am in denial but it seems mad to pump her full of a chemo drug just when puberty is just beginning to start esp when it doesn’t even hurt her ..

Any thoughts v welcome. And thank you for being there! best wishes to all, Victoria


  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Hi Victoria and welcome to the Versus Arthritis Forums.

    So sorry to hear your daughter has been diagnosed with JIA and the symptoms you describe seem to be some of the most common.

    Very understandably you have resisted too much medication but it now looks as though the consultant is suggesting the use of methotrexate to reduce the joint damage caused by the arthritis.

    Methotrexate is a disease-modifying anti-rheumatic drug (DMARD)and is the one most commonly used for JIA. You can read about this and lots more advice on our Q&A page for JIA here:


    If you need to speak to a person in full confidence you can also ring our free Helplines on 0800 5200 520 (Monday–Friday, 9am–8pm)


    You will also have replies from our forum members with first-hand experience of taking methotrexate themselves. However, no one here is a qualified expert and you should always consult the medical professionals who are treating your daughter.

    All best wishes
  • SussexbytheseaSussexbythesea Posts: 4
    edited 30. Nov -1, 00:00
    Thank you Brynmor for your response! Yes you have summarised my feelings. I've read the info on this site & others about JIA and the treatments however - without expecting medical advice - am really hoping that people will respond with their own experiences. The only person diagnosed with JIA who I've spoken to said 'oh no, stay off the meds as long as you can' so weighing that up alongside others' thoughts would be fantastic.

    Thanks again for all or any input!
  • stickywicketstickywicket Posts: 26,003 ✭✭✭
    edited 30. Nov -1, 00:00
    Hi Victoria and welcome from me too :)

    There is no doubt about it, having any disease or anything bad happen to us is nowhere near as bad as having to watch our children undergo it. I have two sons and now two grandsons and they've given me some of the best and some of the worst moments of my life. None of them, thankfully, have arthritis. But, let me tell you my story.

    At 11 I was laid up for weeks with what they thought was 'rheumatic fever'. I was then fine until I was 15 and I saw the doc with extremely painful 'chilblains' on my fingers. A few tests later I was diagnosed will Stills Disease but I think now (That was back in 1961) they'd call it JIA. For years it came and went. It was treated with aspirin, then steroids, then anti-inflammatories. DMARDS, such as methotrexate, weren't on offer back then.

    During my first pregnancy I was pain-free. Then I gave birth and it was horrendous. By now it was fingers, wrists, ankles and shoulders. Gold injections, an early DMARD, got it under some control. Then I had my second pregnancy. A nightmare both before and after his birth. I was unable to go back on gold as it had started to damage my kidneys. Soon, anti-inflammatories were damaging my stomach. The joint damage was now very visible and very limiting throughout my sons' childhoods. Yes, I had knees drained, wrist supports, knee supports, surgical shoes, but the damage continued. Twenty years from diagnosis I got knee replacements as, due to the joint damage, OA had also set in everywhere. So, to me, the 'wait and see' approach means 'wait and you will see the joint damage'.

    It wasn't until I was prescribed methotrexate (and hydroxychloroquine) that my life started to improve. I was on 22.5mgs per week at first. Now, some 20 years later, I'm down to 7.5mgs.

    What I'm trying to say is that DMARDS are the good guys: it is the disease which is the insidious baddie, slowly destroying, unseen from within. Pain can often bear little or no relationship to disease activity. If your rheumatologist says DMARDS are necessary then, to my mind, DMARDS are essential. They are the experts. Look where popular opinion on the so-called 'dangers' of vaccines have got us. A disease which had almost been eliminated is now killing healthy people.

    Yes, I will always believe that the fewest meds necessary are the way to go but sometimes meds are essential. I would not wish my joints (now with not much pain but virtually every one twisted every which way) on my worst enemy let alone an innocent young girl. More than one physiotherapist has told me that, thanks to DMARDS, they don't see people who look like me any more. And I guess that's why I'm answering your post – because, although I have a great, loving family and have had what I consider to be a good life, I don't want your daughter to look like me. Once the damage is done, it's done. DMARDS can only slow things down. They can't reverse the process.

    It's a really tough decision but, if it were one of my grandsons (now 12 and 9) and it was my decision, I'd have no hesitation.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I can't say anything to help but I do have the perspective of being a very ill child.

    I was born in 1959 with eczema and then developed asthma when I was seven. No lovely steroid creams then, no inhalers either so the latter nearly killed me on three occasions. Both of these came from Ma's side of the family but she dodged the bullet. Pa fired the psoriasis bullet (again dodged) which has enabled me to develop psoriatic arthritis without much of the skin condition, lucky ol' me. :lol: Since the age of twelve, when the first inhalers appeared, my life has been enabled by medication and I know that without any of it I would not be able to live as I do now. Okay, I don't have a life as you might recognise it but it's the only one I have and the meds make all the difference. They give me something resembling a quality of life even though it is, at times, severely compromised and curtailed thanks to the disease.

    My mother had to fight to get me to the right hospital, the right specialists, she has to educate herself too so she could argue with my very cynical GPs who told her she was doing all the wrong things. Many moons ago we had a mum on here who was having to inject her 18 month old son with meth, I have no idea how that turned out because we have never heard from her again so hopefully that means he is doing OK.

    My Ma was racked with guilt about the fact she could do nothing to ease my conditions and make me better. I remember her bleating that it was all so unfair as I was loved so much; love doesn't do much on the medical front, you need science for that. If your daughter was mine I wouldn't hesitate to follow the advice of the rheumatologist, my major concern would be slowing the progression of the disease to preserve the quality of life for as long as possible. Once the joints are damaged then that's it, that's when the pain begins and life changes beyond all recognition for all concerned. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • SussexbytheseaSussexbythesea Posts: 4
    edited 30. Nov -1, 00:00
    Thank you stickywicket and dreamdaisy for telling your stories. I can’t tell you how affected I’ve been by them, and how your stories have helped me come to the realisation that I need to let the next step happen, and to agree to the meds.

    Here’s to your generosity in sharing, and to your bravery. Also to all of the people (incl but not only the children) who are living with this disease.

    Best wishes all.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    You're more than welcome, even though I am deliberately childless I do feel for you having witnessed what my mum had to go through when dealing with me. Sticky is right, it is harder for those who are watching than it is for the one who is being watched, especially when you are the one having to make the decisions on your girl's behalf. Arm yourself with proper knowledge, not opinion and hearsay. We're here if needed. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 26,003 ✭✭✭
    edited 30. Nov -1, 00:00
    If we've been able to help, I'm pleased. Believe it or not, I do try not to be coercive but I do believe in the expertise of rheumatologists. It must be a really hard decision when your daughter is, apparently, more or less fit and well but, when the diagnosis is clear, the periods of remission won't continue forever.

    I didn't say this previously but there does seem to be some, still unfathomed, connection between hormones and flares. During my first pregnancy, as can quite often happen in a first pregnancy, I went into remission until the baby was born. Others find that their autoimmune arthritis begins once they've had a baby. It's a bit of a mystery but, if your daughter is now eleven, with hormones kicking in, I think it would be wise not to delay DMARDS. The great thing about them is that we are carefully and regularly monitored, by blood tests and any potential problems can be spotted before they become actual ones.

    Frankly, I think the likelihood is that your daughter will be on medication all her life but it will, hopefully, enable her to have a good life. It is not unknown for people with JIA to outgrow it but I don't think it's the norm. The one thing I'd caution about is any books or dietary supplements that claim they can cure it. They can't. If they could, rheumatologists and Versus Arthritis wouldn't exist. A healthy diet does help but I'd personally like to make a bonfire of all the books and 'cures'.

    I wish you both the best of luck. Arthritis affects the whole family albeit in different ways. I'm sorry you've had no replies from other parents but they will be leading busy, and sometimes difficult, lives. Do remember, though, that our Helpline is usually available and so are we.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
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