Methotrexate, biologics and a warning to fellow sufferers

victoryip
victoryip Member Posts: 7
edited 12. Apr 2013, 09:12 in Young people's community
Okay, so I'm 16 and i was diagnosed woth RA in 2007~ in the past year, I spent about 8 months off all meds because I had no swelling, no pain, no stiffness, and everything was just dandy. So yeah, I was a fool basically, and implore anyone and everyone, don't stop taking your meds! 9/10 the doc knows best, and you'll know all about it when it comes back with a fiery vengeance. As it did with me. I was starting the school and it all just started coming back, right now it's affecting both knees, both ankles, and all the way up the right side of my body, not to mention the general achy-ness and the fatigue and the ever unpredictable mood swings, but the mood swings I guess, are more brought about the drugs, which is partly why I stopped my then current course of sulfasalazine, in hindsight it was a very small price to be paying to suppress the tide of symptoms, now I'm on methotrexate I started this on September the 5th and as of now (19/12/12) it has had no effect at all, patiently waiting for the effects to kick in has frustrated me so much :/ like, honestly I've always admired and trusted doctors to help me and to choose the best course of action for me but I can't help but feel let down, just a teensy bit, I mean it's no ones fault but it's only mayoral to want to pin the blame on someone, that's just the way our minds work I suppose... Anyway! I've been put on prednisolone for a while now, kinda worried about the side effects, hair loss is not the one :/ ngl, it's very very effective it's helped a lot, more than anything but I still feel like complete rubbish when I wake up, the amount of time it takes to put on a pair of socks is embarrassing :') so yeah I'm waiting to start a course of Enbrel in the year, got to tough it out a few more weeks through Christmas, waiting for funding, the doctor says its £10000? Which is just wow, imagine if you had RA 500 years ago or even 50 years ago? But yeah, I've done a bit of research on it, but no article or book can tell you anything but from a practical standpoint, it's always better to talk to someone who's suffered through the same or similar hardships. So yeah anyone with any experience with anti-TNF drugs or just anyone else close to my age with arthritis, tell me about it! I'd quite like to know what I have to look forward to. I think one of the hardest things is finding someone my age to talk to about all this, I think only <1% of people with arthritis are under 18. The horrible loneliness of being part of such a tiny statistic, ah, it is not pleasant.

Happy Holidays!

Comments

  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi Im one of the oldies on here
    Ive had Osteo arthtitis for 9 years (I will be 50 nxt) :(
    You are right about the cost of that drug That's why they try others first
    My next step is methotrexate & then if that doesn't work then its the tfns or is it tnf I always get it the wrong way round
    Maybe if I had started the wonder drug I wouldn't be as bad as I am who knows but its a sad fact that it always boils down to cost but that's life
    I hope you are improving & enjoyed Christmas
    Best wishes
  • hannagoodwin
    hannagoodwin Member Posts: 28
    edited 30. Nov -1, 00:00
    hi victoryip,

    hope you are well, so im 20 now, but was diagnosed with JIA (and various other conditions :() when I was 13 (14 officially), so although I am slightly older than you now, I know how it feels to be 16 and going through what you must be going through.

    Like yourself last year I stopped taking most of my med's for my arthritis due to having a lot less symptoms and thinking that I was okay on the arthritis side of life... and like you found out... bad idea! I know now that I should have listened to the doctors and people around me as within the last 6 months my arthritis has flared up, big time :( I am now back to being stuck in my wheelchair, and not really being able to do much for myself, so don't worry about the sock thing, I can understand where you are coming from, and its not a nice feeling.

    3 months ago I was given the go ahead to start back on methotrexate, but as the tablets gave me such bad side effects when I was on them (from age of about 14 till 17) I now have the injections. I also an on steroids, what dose are you on? and for methotrexate? If this does not work very well, my doctors are talking about the biologics route also, which along with you I am having doubts!

    When I was first diagnosed I felt alone and had so many questions that I felt I could not talk to anyone about, as they wouldn't really understand, as they were not actually going through it. When I found this site, I started to realise that there were people like me, and reading your post it sounds like we are going through a similar situation.

    It would be lovely to talk to you, and find out more

    Here if you would like to talk, as I dont know about you, but I could really use it at the moment

    Hannah x
  • victoryip
    victoryip Member Posts: 7
    edited 30. Nov -1, 00:00
    Thank you for the replies! And Hannah, I'm taking 15mg methotrexate, I didn't get any side-effects like you, but reading up on them, well, they sound pretty crap, I hope the whole injection think works out fine (y) and I'm taking 30mg of prednisone, but hopefully I'm stopping that soon, because the steroids are pretty bad for you? Okay so, I started on the biologics (Enbrel) on friday, that's the day you posted, and damn, they are amazing, i think, maybe, it's really too early to tell, but i was talking to my consultant about it and he told me about one of his other patients who after taking the anti-TNF stuff got better straight away, and a nurse I'm quite friendly with had another story that was much the same. So yeah, I'm hopeful that the good health holds for me, I'm able to walk all about the place and my affected joints are so much better. Hannah, if the subcut methotrexate doesn't work for you, the biologics seem like a good idea, I appreciate that the side-effects are somewhat daunting, but it seems to me, most people who have taken this drug have benefited greatly (like me!) Hannah, i know you must feel lonely and I'm probably one of the few people who can really begin to understand that, so PM me! or whatever, im not to familiar with the whole forum thing, i wish to the best to anyone reading this and a happy new year!

    -Victor
  • victoryip
    victoryip Member Posts: 7
    edited 30. Nov -1, 00:00
    Okay just a quick update, I've had about 3 months worth of Enbrel, and i've been symptom free for two of those. It's amazing stuff i tell you, if anyone has any question regarding it, like how the injections feel, side-effects and stuff like that, just give me a shout!
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hey Victor
    that's great news long may it continue
    best wishes
    M

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