methotrexate worries me!!!

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GLouise
GLouise Member Posts: 5
edited 27. Nov 2012, 17:47 in My child has arthritis
My daughter is 4 and was diagnosed with oligo articular jia in April 2011 after many trips to the doctor and being refered to the wrong department at the hospital. This was an awful time as she was in a great deal of pain and could not walk what i would have given to talk it all away from her.
She had her first steroid injection in May 2011 which worked wonders and i was amazed by the results that were noticed in only a few days. This was such a relief. She had a flare up in April this year and had her second steroid injection into her almost to the day in May.
We had a recent check up appointment at the hospital. We went knowing another flare up was present expecting them to say they will inject her knee again, unfortunately we were told it had come in her ankle and her jaw too. :( We were in complete shock. :shock: We were also told about a long term medication to try and keep her flare ups at bay. This medication is methotrexate. We were handed a leaflet to look through and were told a decision should be made if a flare up returns. She is due her next lot of steroid injections on 7th November.
I have read up on methotrexate and it scares me with the side effects and the fact its an anti cancer drug. Has anyone had any experiences of the drug and any
long term effects? I am also worried that my daughters arthritis with flare up again and be worse and have shorter breaks inbetween as it was only 4 months this time.
Also out of interest is anyone successful claiming dla and know the terms for claiming?
Thank you in advance.
GLouise x

Comments

  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Hello GLouise. I hope some other parents will be along soon but the forums are a bit slow at the weekend. I’m not the parent of a child with arthritis. I’ve had RA myself since I was 15 and I’m now a grandmother.

    The diagnosis must have come as a terrible shock and yes, we would all love to take our children’s pain away, especially when they are so little. The steroids must have seemed like a miracle. They work like that for so many of us, both tablets and jabs, though I believe the injections become less effective the more one has. Unfortunately, steroids are not a permanent solution. They do seem like it but they don’t take the disease away and, taken long term, bring their own problems.

    Methotrexate is a disease modifying med (DMARD). It is usually the first port of call and is extremely effective for many of us. (I’ve taken it for over 10 years now.) As with all meds, manufacturers have, by law, to list all possible side-effects but that doesn’t mean to say we will get any of them. Remember, some of these side-effects will have been experienced by people who had lots of other problems and were taking lots of other meds besides their meth. Also, taken for arthritis, it is at a much lower dosage than when taken for cancer. Personally, I find I’m occasionally very tired the day after I take my meth, or sometimes the day after that. When I wash my hair a few extra ones come out but no-one looking at me would think there was any problem. I try to avoid people with colds as it can take longer to shake them off than before. But, that’s it. On the plus side, my RA has been under good control all the time I’ve been taking meth and that is so important. And your daughter will be well-monitored while she's on it with frequent blood tests that will highlight any potential problems before they get chance to develop. Yes, they are powerful meds but this is a powerful disease which requires strong meds to curb it.

    I was lucky enough to have two extremely unarthritic sons. If either of my little grandsons developed arthritis I’d want them on DMARDS as soon as possible but I fully understand your wanting to explore every avenue first..

    You might find Arthritis Care’s leaflet on oligo-arthritis in children helpful. http://www.arthritiscare.org.uk/AboutArthritis/Conditions/Arthritisinchildren
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • iluvhobbits
    iluvhobbits Member Posts: 32
    edited 30. Nov -1, 00:00
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    Hi,
    Really sorry to hear about your daughter, I know exactly how you are feeling, my daughter is now 14 and had had JIA since she was a year old in her knee and ankle joints. Over the last 13 years there has been periods when she has been disease free and off all medication but we have also had several 'flare ups'. She has had several steroid injections over the years in her knees and ankles which were all a great success but unfortunately we did notice that the period of time they lasted did shorten. My daughter was on NSAID's for several years but due to her joints getting worse she finally started taking Methotrexate just over 2 years ago. I was really scared about her taking it and did not know what to do for the best but as a family we decided that this was the best route to take. She started off taking the tablets but switched to an injection once a week as its supposed to have less side effects and be more effective, my husband does the injection and I provide the cuddles (even at 14). I must admit Tara seems really well, she doesn't really experience any side effects or pick up infections any more that a 'normal' child, her arthritis is being kept at bay so she can experience a normal teenage life.
    You have just got to do what you think is best for your child, I know none of us want our children to have to take any medication but at the same time we just want them to be like their friends and enjoy their childhood.
    I hope this has helped a little bit, good luck with your daughter.
    Best Wishes,
    Sandra
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello GLouise, I apologise for being late to this but life has been throwing all sorts of obstacles into my path over the last month or so.

    You are correct in saying that meth is a cancer drug but to treat that it is given in far higher doses than is used to treat arthritis. It is a powerful med, and like all powerful meds it comes with its own set of problems but they are not guaranteed to show up. I take meth and have very little trouble with it, just the occasional bout of being extra tired the day after I've taken it. The thing on which to focus is is that it can be a very effective drug and that is important. As an adult when you are on meth you are closely monitored with regular blood tests and these are important as they can highlight problems before they become too bad and I suspect that it will be the same for our younger patients. Arthritis is a progressive disease, it does spread but the rate of that, and what it affects, is very individual.

    I wish you and your little one well and I hope the next round of steroid injections help. Please let us know how she gets on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • GLouise
    GLouise Member Posts: 5
    edited 30. Nov -1, 00:00
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    Thank you so much everyone for your responses these have really helped, although i am still finding it tough that she may have to go onto meth. :(
    My daughter had her pre op last Tuesday and unfortunately she has got to have all three areas injected. Her op is 2moro (Wednesday 7th) so a long day ahead of us with lots of waiting around. I am feeling a little nervous for her as its the three areas but i have got a very brave princess. I will let you know how she gets on.
    Thank you again for your support.
    GLouise
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    I am thinking of you both very much. I hope it all goes really well.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello again Glouise, how did things go on the 7th? I hope all is as well as it can be. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • GLouise
    GLouise Member Posts: 5
    edited 30. Nov -1, 00:00
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    Hi things went well on the 7th thanku. she seemed a bit more knocked about this time sore and the anesthetic knocked her about.She has responded to the injections so far so good, but just a waiting game for any more flare ups :? as if she does it will be the methotrexate route only time will tell. Thanku x
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
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    hi GLouise,

    Positive thoughts for many days, months or years without any flare ups. Good wishes to you of many days enjoying fun and laughter with your daughter. precious times. I can share my experience of my daughter and methotrexate and JIA, should that need arise.

    Kind regards :)