jordan's rhummy appointment today

jordansmum
jordansmum Member Posts: 316
edited 9. Jul 2010, 04:42 in My Child Has Arthritis
hi everyone sorry not posted for abit i am in abit of shock we have just come back from jordan's appointment and they have now decided to put him on methotrexate :shock: as his levels are increasing and the last injection only lasted for a month. My head is in a spin as this treatment seems quite contraversial (sp) i have read quite a few threads on it they want him to start today but it seems the side effects are quite bad any advise would be greatly recieved as i know that so many people take these meds on this site . Thanks in advance jenny

Comments

  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    HI Jenny,

    wow! what a day for you .... no wonder you are rather in shock!

    I have been taking Methotrexate for a number of years now, and I can say that I do understand how worrying it is when first considering it as a treatment. It must be even more worrying for you having to decide on this treatment for Jordan.

    I don't have any experience of MTX with children, but I do know from lots of posts on here that side effects vary considerably from person to person with adults.

    personally I put off using MTX for as long as I could for a number of reasons, but having decided to take it I realised that it was a great help to me. Although at first I did have problems with side effects, they did decrease in time, and with a change to injections the MTX has, on the whole, worked well for me.

    What did sway me to take MTX was the thought that the longer I went without getting my RA under control the greater the possibility of joint damage.

    It is such a tricky decision for you, but I hope that knowing that lots of us manage with MTX very well might help you a little.

    Also, do ring the helpline people if you want to talk this through, as they are really great.

    good luck & I hope that if you choose it the MTX works well.

    hugs
    WOnky xxxx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Jenny
    So sorry you have had such an upsetting day. I can't begin to understand how it must feel for you to have to make the decision about whether Jordan should start on Methotrexate – you have all my sympathy. Have you also posted on the “Young Person’s Forum”? You might find other parents there in the same situation who would be able to share their experiences.
    I know that Mtx is a scary thought for anyone – as you will see from a quick glance at the LWA forum but it is now a very widely prescribed drug (certainly for adults) and, although not everyone benefits, it can work wonders for arthritis and not everyone has side effects to the same degree (if at all).
    On a positive note, I read an article recently in the Daily Telegraph about a little girl aged 6 who, her parents say has “been transformed” since starting weekly Mtx injections. She can now ride her bike and play with her friends and, is apparently now a “really cheeky and normal little girl”. I tried to send you a scanned copy of the article to read, but system won't let me - sorry.
    Thinking of you.
    Love Tilly x
  • dorcas
    dorcas Member Posts: 3,538
    edited 30. Nov -1, 00:00
    Hi Jenny,
    .
    It's quite a thought having to consider Mtx for Jordan but I'm sure your docs would not be suggesting this unless they firstly thought it a potentially effective and necessary treatment ...and secondly were confident of the screening and monitoring for Jordan given his young age.

    I agree with everything Wonky and Tilly have said.....I've been on Mtx for several years and like Wonky have moved onto injections which in my case reduced the side effects and have the advantage of lower dosage as it is more easily absorbed. It is a very useful but potent drug.

    It is a big decision to make so why not make a double appointment with your doc to discuss your questions / concerns at length. Also some rheuumy departments have a specialist nurse/ sister whom you could also talk to and who would have knowledge of Mtx being used with other children and advise on the do's and dont's...

    thinking of you and Jordan .

    lots of love,

    Irisx
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, I've no experience about this drug, other than what I've heard on here. Do you have anyone you can discuss it with, like a friendly GP or nurse. I'm sure that might help to put your mind at rest. I sympathise with you for having to make these decisions for a child, its bad enough making decisions about new treatment for us.

    All I can say is, I'm sure they are trying to do the best for Jorden, but do find someone knowledgable to discuss things with first, if you have worries and concerns.

    Thinking of you, love Sue
  • dorcas
    dorcas Member Posts: 3,538
    edited 30. Nov -1, 00:00
    Just another wee thought......why not post on the young peeps forum to see if some of the younger ones have been or/ are on Mtx?

    there are also parents of youngsters with JIA who may have gone through the same decision dilemma for their child.

    ......might be able to give you some first hand info on the monitoring and speak from their experience.

    hope Jordan is in less pain soon.

    Iris x
  • frogmorton
    frogmorton Member Posts: 26,669
    edited 30. Nov -1, 00:00
    Jenny

    I just want to wish you all the very best - hope the new teatment is perfect for Jordan

    Love

    Toni xx
    Love

    Toni xxx
  • jordansmum
    jordansmum Member Posts: 316
    edited 30. Nov -1, 00:00
    thanks everyone for your messages of support i really appreciate it i will have a look at the young peoples forum and weighing up the pro's and con's i have decided to give it a go so jordan started his first treatment last night the rummy nurse is so lovely and she has put jordan's fears at rest 8) the only thing he is not happy about is the blood tests as they can never find a vein poor thing he has been told of the side effects and that they can be treated if they become troublesome. I am hoping that jordan himself will start posting soon . Thanks again everyone may your pain today be under control.
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    jordansmum wrote:
    thanks everyone for your messages of support i really appreciate it i will have a look at the young peoples forum and weighing up the pro's and con's i have decided to give it a go so jordan started his first treatment last night the rummy nurse is so lovely and she has put jordan's fears at rest 8) the only thing he is not happy about is the blood tests as they can never find a vein poor thing he has been told of the side effects and that they can be treated if they become troublesome. I am hoping that jordan himself will start posting soon . Thanks again everyone may your pain today be under control.

    Hi I'm Michelle, my daughter Kayleigh is 4 and has been on mtx injectinos since January. Looking at how she is now compared with Jan omg what a difference. She does get belly aches but takes one folic acid tab the day before her injection and this seems to help. she is also on omeprazole and movicol for side effects but not sure what ones helping what anymore lol she is still taking ibuprofen we haven't been able to stop that yet, but we have now dropped apracetamol yay.

    We have a nurse come out to do her injections, there's no way I can do it *sudders* and although she cries everytime she knows it's helping her. She has her bloods taken ever 4 weeks and is as good as gold for that as long as magic cream is used :) I hope it works as well for your son as it has for Kayleigh. Oh and don't expect it to start working straight away, I was told a good 4-8 weeks for it to start and I think I can truly say that the last month has been the best I have ever seen her since all this started so it's taken a while to take proper effect but I did start seeing it at about6 weeks for her. good luck

    Michelle xxx
  • jordansmum
    jordansmum Member Posts: 316
    edited 30. Nov -1, 00:00
    cheers michelle i feel much better after reading your message i was told at the appointment not to expect anything to happen for about 8 to 12 weeks .Jordan has only complained of itchy skin lol but hey we can cope with that.The doctor said that his dose would probably increase over the next few months until things have settled down he is on tablets at the mo but hey i'm with you i don't think i could do injections either.He has to take his folic acid 2 days before hand i suppose this varies with everyone. Glad to here things are going so well with your little one it gives me great hope.
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    My dad takes one folic acid day before injection too so it might be that injections is day before and tablets 2 days before.

    I hope everything goes well, we've just had nurse out for her injection this morning and she cried yet again but nurse has scratched her with the needle on taking it out this time :( so going around with bright pink plaster on her thigh lol