Coburn09 Member Posts: 9
edited 24. Mar 2015, 05:26 in Young people's community
Hi everyone,

I'm new to the group and I'm after some help.

I've had arthritis since I was 10 (now 24) I wasn't diagnosed until I was 15 (JIA) due to no one ever following things up from when I was hospitalised at 10 with my right hip being in traction for a week.

So when I was diagnosed I was on lots of different medication and 1 of them was methatraxate. I had stopped this after 1-2years as I felt worse from it. With more joints being affected. At the time I only took it because I was told to so I don't actually know a lot. My last flare up was In 2009 when it was treated with steroids tablets (can't remember correct name). Then over the last 6-7months joints have started getting sore again. I got sent to a consultant who was pushy about me taking methetraxate but I said no at the time. He done the steroid injections into my wrist and elbow. It helped my elbow but not my wrist still looks like I have a ping pong ball in there too. Now to get to why I have wrote this. I'm due to go back to see the consultant in 2weeks and I know he will be pushy for methatraxate again. Has anyone had positive reviews on it? I really need the pain in my wrist to stop and I will be asking for steroid injection into my shoulder again as it's so painful and injections mostly work with me. I've had 9 previously


  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
    I think you have a little window of opportunity here to have a good chat with the consultant about your arthritis and treatment. Please forgive me for being blunt but ai think you've got things a bit confused.

    You might have had a bad experience with meth but you still need either that or another DMARD (Disease Modifying Anti-Rheumatic Medicine) to keep your arthritis under control. Steroids, of any kind, seem to do that but they only mask thinhs and, long-term, can be harmful in many ways.

    Please talk to your consultant about the best meds for you and do listen carefully to the answer. It might not be the one you want but the one you need and might later regret not taking. Arthritis is a powerful disease. You need the right weapons with which to fight it.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • spots123
    spots123 Member Posts: 4
    edited 30. Nov -1, 00:00

    I'm new to the group too and also 24. I have psoriatic arthritis and am currently on methotrexate and sulfasalazine. The consultant shouldn't be pushing you into any treatment you're not happy with . It's your body and you will have to cope with the side effects.

    For me methotrexate has been ok and is helping. My advice would be read up lots before your next appointment- I've used arthritis research uk's drug leaflets before and they're really good to find out everything and be informed before you go to an appointment :)

    Let us know how you get on.
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    Hi, I'm also new to this forum and thought this a good place to introduce myself (I've already spoken to sticky - hey!).

    I'm 28 and diagnosed with sero negative inflammatory arthritis at age 21. I was initially started on sulfasalazine but had to withdraw it after a couple of months because I had a neutropenic reaction (white cells etc went too low) so unlikely I can ever have that again. The next step they suggested for me was also methotrexate. Like you, I was not comfortable with taking it at all and worried about the potential side effects like hair loss etc. Well I ended up on it for about 6.5 years and I can honestly say for most of that time I felt 'cured' and often wondered if there was still anything wrong with me! Naive I know but it goes to show what this drug can do! I didn't have any side effects really, certainly no hair loss etc, always took it at bedtime to avoid any nausea. The main one for me was I get severe mouth ulcers which seemed to worsen on it, but I'm prone to them anyway and get them even off mtx. Always took folic acid 5 days a week to help this.

    I've been off mtx since dec 2012 now and after 9 months of stopping I've been having a flare since September. Not willing to restart it atm as I want to try for a baby soon, but again it shows how effective the drug is when you're taking it. It's always scary starting a new drug and I tend to research EVERYTHING before I do which makes it so much worse! But from what I do know out of the DMARDS mtx seems to be one of the most effective and well tolerated ones.

    Sorry about the essay I don't seem to have mastered the art of forum writing yet! :lol:

    Nice to meet you all anyway, let us know how you get on
  • Coburn09
    Coburn09 Member Posts: 9
    edited 30. Nov -1, 00:00
    Only see the replies :-)

    I've had my appointment and after doing research I still wasn't sure. I had a different doctor and she had suggest LEFLUNOMIDE. I had previously done some reading up on this and had agreed I will give it a shot. This consultant was so lovely she sat down and listened to my concerns and helped me with any questions which I took along with me. With being on the methotrexate at a youngish age I just done as I was told and took it. All I ever wanted was to be "normal" do what my friends done and tht never happened.

    Now I'm much older and wiser and have 2 children to also think about I need to have something to help. I think I'm just about to start a flare too as I always get the sore throat just before and more joints are starting to ache. I'm starting my new medication tonight.

    I do love hearing other peoples experiences on the methotrexate :-)
  • amps
    amps Member Posts: 2
    edited 30. Nov -1, 00:00
    Hi I've just joined and found it really interesting what you all had to say about methotrexate.

    I have been suffering from PA for a few years now but only recently have been diagnosed after being past around from doctor to doctor for a very long time.

    I have had next to no side effects from the methotrexate accept for some nausea and dizziness but my doctor says it should be working a lot better than it is and has decided to put me on lefunomidel as well.

    I agree with spots123 about doing your research and making sure you know what you are doing with your body. I've read all the i formation and thats what lead me to here, that and a persistent boyfriend.

    Hopefully the two drugs together will help with the pain and swelling but I have definitely seen an improvement since starting the treatment.

    I hope it's working for you too!
  • AnnaMilton
    AnnaMilton Member Posts: 44
    edited 30. Nov -1, 00:00
    Hi, I have never been on leflunomide but I have just started Methotrexate few days back. I am having near to no or very little side effects like nausea and metallic taste, that I am sure to settle, once my body get used to this new drug. But I am feeling far better than I was before starting meth; I don’t feel my joints much achy now and it’s been a while since my last flare.

    I am reading a lot about RA offlet, as much as I can. The combination of these 2 drugs seems to be good option before starting biological one. Many rheumatologist prefer to add leflunomide if meth as a single therapy fails or doesn’t give results as expected, so you seems to be an ideal candidate. Hope you get on well.