stopped the meds

so i came off enbrel just over a month ago and also stopped my piroxcicam. everything seemed fine but now the pain is back. My arthritis is in my hip and spine. at college i study mechanics, and find it very difficult to do much. i have to carry on but often it is nearly impossible. i have no idea what to do but cope with the pain. at age 17 i look stupid when i try to stand up, i find it embarrasing and right now my life is at a standstill

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  • WHy did you stop the Enbrel? Is there any chance you can go back on it? I think it would be really good if you could get a quick appointment with your rheumatologist again to see if you can get back onto meds as soon as possible - see your GP to see if they can hurry up a review.

    I know its a really hard thing to accept things like inflammatory arthritis at your age, but if it is in your spine, then it really does need quite aggressively treating to stop it becoming a major problem later in life - as well as giving you a normal life as a teenager. There are a lot of teenagers and even children on drugs like Enbrel, and it does seem to have a much better safety profile that was first thought.

    Has your rheumatologist said exactly what your diagnosis is? With it being in your spine I'd think he was treating your for spondyloarthritis (google ankylosing spondylitis to find out more) and that definitely needs early and ongoing treatment to avoid deformity.

    If you are having a hard time accepting this diagnosis, then please contact any one of the arthritis organisations to see if they have a young persons group where you can contact others in the same position. If you do have spondyloarthritis then the spondylitis association of america has an international online forum with a "20-somethings" group that has a load of young folk who are at college and trying to get on with a normal life and give each other a load of support.

    It is possible to control this disease, but you do have to work with your rheumatologist and accept treatment.

  • Hi,

    did Enbrel not work for you? Or were you just fed up with taking drugs? I'm betting your friends at college don't really get it about your illness?? And if that's how it is you could feel like the only 17 year old in the world that has this illness. But you aren't! You could start by phoning the NRAS helpline - it's on this site somewhere - and ask them how you can get in touch with other young people who face similar challenges. (But I expect younger people who use this site will get back to you too.)

    What is your Rheumatologist like? He or she should be pulling out all the stops to get you back on track. It's understandable that you feel embarrassed, I do too & I'm 3 times your age. You have to tell your Rheumatologist things like that. It will help to make them realise that you are very serious indeed about wanting to get as fit as you can.

    Please post again, won't you? Keep asking until you get the help you need and start to feel a whole lot happier. And if you can tell us a bit more about why you stopped Enbrel, you might get more ideas from people here, too.

    Christina x

  • Hi Shanex1

    I'm so sorry to hear you're having such a hard time of things at the moment. It sounds as if you've had some very useful suggestions already, and as the others have mentioned, it would certainly be worth seeing if you could get an urgent appointment with your rheumatology team to find out what the next steps are with your treatment.

    I don't know if you have contacted any organisations but Arthritis Care have a specific branch for young people with arthritis called 'The Source'. They have a dedicated helpline and young persons discussion forum. You can find out more on their website: arthritiscare.org.uk/Public...

    There are also quite a few young people on here who post quite regularly so I'm sure someone will be along for a chat soon!

    Kind regards

    Sarah Kate

    NRAS

  • Sorry to hear you're having a difficult time at the moment. I would advise you to contact your Learning Support team at college to get some support in classes. I work with students in FE and have met several students over the years with juvenile arthritis. I understand it's really hard and can be embarrassing, but you may be surprised how supportive your fellow students will be and your tutors should be able to help you if you let them know. Good luck.

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