Totally fed up :(

Hi, I haven't actually been Diagnosed with lupus but 'connective tissue disease' I have been taking 400mg of hydroxychloroquine daily for nearly two years which has helped until recently my hands and feet are very painful and my joints are swollen and have hard lumps?? Also feeling like I can't stand up straight without leaning against something as I feel jittery and weak and have extreme fatigue.

Last week I went to my gp about my hands and feet who gave me a sick note for work and told me to contact rheumatology, I contacted the rheumatology nurses and have been given a depo medrone 120mg injection, I have had one of these before and it worked within a few hours but this time I don't feel like I've had any effect from it?

The nurse was lovely and said not to worry if it doesn't work because there's other treatments I can try, but I'm scared to as they've been described as 'toxic' to me before so I'm obviously reluctant to try them.

Just feels like I've got absolutely no control over my own body any more and no quality of life :(

Totally fed up with it.

Thank you for reading my moaning and sorry if it doesn't make much sense my brain feels like mush!

8 Replies

  • Hi linz84,

    I'm sorry to hear that the depo medrone injection hasn't helped to alleviate your symptoms this time. Are you have any further tests/investigations done to look into these symptoms and see whether different treatment may be needed?

    Your doctor will balance the potential benefits from any new treatments against the potential side effects they may have, so they only prescribe them if it is important and they believe it will do more good than harm. If you are concerned about the side effects/long term effects of any treatments before starting them, please discuss it with your doctor so that they can explain their reasoning for prescribing it.

  • Hi, thank you for the reply. the rheumatology nurse took some blood tests while I was there but not heard anything back yet, I don't seem to be having any other tests or investigations just blood tests and see rheumatology once a year now :(

  • Do you know when you may hear back about the blood tests?

  • It is usually within a week so hopefully by Wednesday.

  • Let us know when you hear.

  • Big hugs to you! It sounds like you're doing the right things. I know it's difficult to stay positive when you've had bad experiences with some of the medications (I have too) but if you keep doing the best you can to take care of yourself with enough rest etc things may well get better anyway. It's the time it takes and the not knowing when you'll improve that really makes it hard but you've got to believe you'll get there! (Easier said than done at times, I know!)

    Best wishes!


  • Are you worried about corticosteroids or other DMARDS? I think corticosteroids can be really helpful for flares, and even in very low doses for longer. In higher doses for long periods you have reason to worry. Last year my hips got so bad I was kind of crying out with every step, but I went on a few days of prednisone and it brought me back to walking with both legs. Still having trouble getting up and down stairs, though.

    Sorry the injection didn't work.

  • Hi thank you for the replies it means a lot I haven't really got anyone to talk to about it all my 'friends' ive confieded in about my health have completely blocked me out of their lives so only got my fiance and my mum :( how pathetic is that?

    It is the not knowing if or when your going to feel 'normal' (what ever that means anymore haha) again and everything is slowly progressing which is worrying too I'm only 31 and feel 91 it really scares me the thought of how I'm going to be in 5 or 10 years if everything keeps progressing at the rate it is.

    The rheumatologist has mentioned methotrexate in the past as the next option but he said he's reluctant to prescribe it as its quite toxic so that really doesn't fill me with much confidence.

    Paul-howard- my bloods came back ok

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