My 4 year old starting methothrexate any advice please ?

janeb
janeb Member Posts: 18
edited 13. Apr 2011, 14:20 in My child has arthritis
Hi my four year old is starting Methothrexate injections on Tuesday am concerned re.side effects etc... Would be grateful if anyone has been through this and has any advice, her doctor has not given me much info , thankyou x
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Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hello and welcome to the forum.

    Not sure that anyone with a child as young as yours has had the treatment but if they have they will be along at some time.

    The telephone helpline will be open on Monday and I'm sure they will have some information and advice for you. Tel: 0808 800 4050
  • catherine22
    catherine22 Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi i have a 4yr old who started methotraxte injections in September, and it wasn't as bad as i thought it would be. As side effects are concerned we haven't seen any dramatic ones, he's sometimes more lethargic than i would expect a 4yr old to be but its difficult to say whether thats the injections, arthritis or just starting school. I think he doesn't eat quite as well as he used to but doesn't complain of nausea but things he used to eat he's not so keen on like yogurts. I had some leaflets but can't find them at the moment, but know they said small amount if hair loss is possible but we haven't noticed any.

    We give his injections in the evening before bedtime so that if he does feel sick hopefully he'll be asleep, which seems to work.

    We also had a community nurse do the first few injections, which was a great support and saw a play specialist which also helped prepare him and made a sticker chart for him. But the the thing that helped the best was putting ametop or emla cream (magic cream) on his leg before the injection as it does sting without it. Without the cream he used to scream and fight but with it he just sits on our lap and doesn't cry.

    Hope it goes ok, i know i found it really difficult because you don't see any positive results for a while and feel awful making them go through the injections. But after a few months it doesn't feel as bad and becomes a routine and not something i think about all the time.

    Catherine x
  • janeb
    janeb Member Posts: 18
    edited 30. Nov -1, 00:00
    Thankyou for sharing your experiences with me i feel slightly more relaxed about starting treatment now, My daughter has enthesitis related arthritis in her left ankle, toes and her fingers she has just had steroid injections but they have made no obvious improvememt as yet, she was only recently diagnosed. Hope your son keeps improving.x
  • anniesmum
    anniesmum Member Posts: 102
    edited 7. Feb 2011, 12:30
    Hi Janeb
    I started mtx injections with my then 5 year old and it is a horrid thing to get your head round. We started off well but apparently they can sting quite badly and after a while Annie started really not wanting to have them. It became very distressing but we were then advised to ice the area as well as do the magic cream and this did the trick. For various reasons we are now on tablets which I was worried would make her feel sick - but fingers crossed all seems well there to. I really hope it works for your little one - like all arthritis drugs they work for some and not others - arthur is a contrary beast.

    PS Welcome to the forum
  • andylamb
    andylamb Member Posts: 41
    edited 30. Nov -1, 00:00
    My daughter started MTX just after her 5th birthday. She was on it for a year. Side effects wise she didn't have anything visible; but it badly affected her liver. There'll be regular blood tests to make sure the MTX isn't affecting the liver or kidneys. Also the MTX never actually controlled her arthritis; she continued to have flares throughout the year she was on MTX.

    Other known side effects which we didn't experience are an upset stomach; folic acid can help with that. It can also affect hair quality, but it comes back when you come off the drugs.

    MTX is a chemotherapy drug; but it's given in much, much smaller dosages for arthrits than for cancer.

    Due to the liver damage, they moved my daughter off MTX and onto Enbrel 14 months ago.

    Good luck, I hope it works for you.
    Andy
  • janeb
    janeb Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi Andy and Annies mum,
    Thankyou both for your advice on the dredded mtx , we had first jab today and it was awful ! I will try the ice trick next week as my daughters leg was stinging for ages, just hope it gets easier as time goes on. Jane.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Excuse me for butting in - I am not a mum, or a child on the receiving end, but I do inject meth - I assume it's the same kinda mixture. The stuff itself stings, it can feel a little like an electric shock and it can twang for a while after the actual event. You cannot see the nerves in the skin, get too close to one and yes, it will ping and twang and zing. If you are injecting in the upper leg, perhaps you can sit her with her legs out straight - this apparently relaxes the muscles and can make it less painful, that is what my rheumatology nurse told me. She used to do it in my arm, oh boy that was an OUCH! I prefer to do my jabs in my stomach area, one has less nerves there and it really doesn't hurt as much, well not for me. I wish you all well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • janeb
    janeb Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi just wanted to say thankyou for helping me try and understand MTX we did first injection in the leg her nurse wanted to use her arm next week so i think we will stick with the legs after hearing from you .
    Thanks Jane.
  • rgentry1989
    rgentry1989 Member Posts: 52
    edited 30. Nov -1, 00:00
    i my self was it onit as a child and nw im 21 im back onit its not a bad drug it done wonders for me as a child you wouldnt off known anything was wrong with me apart frm mthly blood tests personally as a child i hated it so did mum, i dnt like it much as a adult either when i first went on it it lowered my white blood cells and i ended up with a infection 10times worse and was in hosp but that was as a adult i cant member anything like that as a child and to be honest the relif it gave was soo worth it not like that for everyone as its not working nw but its deff worth a go any questions about anything please ask
    rachel
  • janeb
    janeb Member Posts: 18
    edited 30. Nov -1, 00:00
    Thankyou for answering my queries about mtx. My daughter has really gone off her food since first injection last week, was wondering if you were affected like this, am concerned she will loose to much weight as she is teeny anyway.
    Thanks Janebx
  • rgentry1989
    rgentry1989 Member Posts: 52
    edited 30. Nov -1, 00:00
    I did lose wright due to the infection and wud be somthing I'd deff be inclined to speak to a doctor about being a dispenser as well it can have many side effects and mess with the blood cells as it did with me its a toxic drug so a close eye is needed did u get a book explaining side effects?
    rachel
  • janeb
    janeb Member Posts: 18
    edited 30. Nov -1, 00:00
    Hello again, I have not been given a book or any info on mxt was simply told about the drug and was advised about the monthly blood tests to monitor liver function. My daughter has eaten nothing today am very anxious about her getting second injection tomorrow. Thanks again
    janebx
  • rgentry1989
    rgentry1989 Member Posts: 52
    edited 30. Nov -1, 00:00
    Hello, well I got a book with details side effects etc mayb u shud enquire about this doesn't sound like her doctor is very on the ball, there is a nhs drug helpline u shud give a call they can give u info nt sure of number I was given a card and cnt find it :( but if u google it I hope her 2nd injection is ok and I reli wud stress the not eating its nt normal and is ob if it is coming in time with the methro its prob to blame and if nt it needs to be looked into x
    rachel
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    My daughter also started MTX just after her 4th birthday and I do have to make sure she takes her folic acid every week or else boy do we know about the belly aches. This is the only thing I've noticed.

    She does now have excessive hair growth all over her body but I'm not sure if it's the MTX or Enbrel doing it I think the latter but can't be sure.

    Good luck and it does get easier in time.

    Michelle xxx
  • janeb
    janeb Member Posts: 18
    edited 30. Nov -1, 00:00
    Thanks for the advice I was not told about folic acid so I will be asking about this on my next visit, she is getting belly ache for a day or so after treatment, I will watch out for any new hair growth, thanks for the warning.
    Jane x
  • janeb
    janeb Member Posts: 18
    edited 30. Nov -1, 00:00
    Thanks for your advice the second jab has had just the same effect as the first so i will deffinately be seeking advice about her non existant appetite .
    Thanks again janebx
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Kayleigh and in fact most people on MTX get given a weekly dose to take Folic Acid. The advice varies though I was told to give it a day before having the injection but my Dad and a lot of other people I know take it the day after the injection.

    I still give it to her the day before she only has a 5mg tablet tiny little thing and it's only for that one day she has it but it does the trick totally.

    I think we were given it without waiting to see if she would develop that side effect as she gets stomach aches from taking ibuprofen so they thought better to be safe than sorry and if I forget (a rare thing) to give her the tablet boy do I know about it come Saturday evening/Sunday morning.

    Def best asking them or even getting your GP to prescribe it rather than waiting for the hossie to call you back.

    Good luck
    Michelle xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hi janeb, your doctors have not been very helpful to you, have they? Given the age of your daughter that is not very good service at all. Meth is a powerful drug and it can cause all sorts of problems - it can also be a very effective treatment for arthritis but it can take a while for the better effects to be seen/felt.

    One of the biggest side effects with meth is nausea - the idea behind the injections is that this is avoided as the stomach is not involved in digesting tablets. I am very suprised that she has not been given folic acid - I take one tablet of that per week, two days after I do my injection. I was also given (eventually) a methotrexate treatment record book. This has information about the drug and its possible side effects, and my blood test results are filled in on a monthly basis. On the back of my book there is this address: www.npsa.nhs.uk It's the National Patient Safety Agency - I haven't looked but there might be some relevant info there for you.

    I think you need to contact her hospital and ask about the folic acid and how often her bloods should be done - you could also ring the helpline here and see if they have info they could send out to you. I wish you and your little girl well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • janeb
    janeb Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi Michelle and dreamdaisy,
    I will definately be asking for some folic acid tablets tomorrow at our next appointment, It is heart breaking putting her through this but i know it has to be done. Thanks so much for the advice its great to know we are not alone.
    Hope you have a good week janex
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hi janeb, it's been nearly a month now, how are things? I hope the FA has helped (glad I looked in, it's reminded me to go and take mine!) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • anita01
    anita01 Member Posts: 43
    edited 30. Nov -1, 00:00
    Hi, My daughter also went off most food due to nausea on Methotrexate, She was prescibed some anti sickness meds, some come as a liquid like Cyclizine, some as melts like Ondansetron, so these may help,

    Best wishes,
    Anita
  • janeb
    janeb Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi again DD
    Thanks for asking how we are doing, Its great to know you are not alone . I asked the doc about folic acid he said it was not necessary so that was the end of that ! I tried to buy a liquid version to give her but have had no success in finding it, but i will keep looking. Katie has had a bad few weeks has started high dose steroids on top of mtx so thats even more time in hospitals.
    Glad you remembered to take your FA ! hope you are keeping well.
    Thanks again Jane x
  • janeb
    janeb Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi anita,

    Thanks for the advice I have had a chat with my daughters doc and have been given ondansatron liquid, Dont know how I will get her to take it but will give bribery a go ! Anything is better than the sickness and her grey face.
    Thanks Janex
  • anita01
    anita01 Member Posts: 43
    edited 30. Nov -1, 00:00
    Hi Jane, I hope the ondansetron will help , try adding juice/ cola if she'll drink that, just not too large an amount or she'll have trouble getting it down in one go.

    Some dr's prescribe without realising what trauma's we and our children have with getting them to take them, I recently had great help from our local hospital pharmacy, they have a medicines information service. the prescribed tablets (Azothiaprine) were changed to a liquid direct from the manufacturer, and some others (vit D3/calcium, she has been on steroids a long time now) changed from a chalky tablet supposedly chewable, to a lemonade tasting effervescent one. It has made all the differance, and my 8 yr old is now happily taking them !

    Good luck,

    Anita, x
  • anita01
    anita01 Member Posts: 43
    edited 30. Nov -1, 00:00
    P.S..
    Hi again, just read previous posts, and wanted to add that we were given a booklet about methotrexate from the pharmacy when it was first prescribed, It was a combination of record of dosage , notice to tell anyone else ie if in an accident,( like the steroid cards) and things to be aware of.

    Also Arthritis Research http://www.arthritisresearchuk.org/arthritis_information.aspx has lots of very good information including drugs, maybe a bit more comprehensive than this site,

    Anita