Acceptance and pain

Hi, I'm new here... I was diagnosed with lupus in March after almost 8 months of prodding and poking and test after test. I really struggled with coming to terms with the diagnosis, as it seemed on top a pretty traumatic childhood I then had to deal with this on my own.

My main symptoms are really tender joints, severe skin breakdowns, boils, calcium growths in both hands, fatigue and iron / vitamin d deficiency. Treatment wise I've had the steroid injections in my hands which helped for about 6 months, I've had a longer lasting steroid injection that only lasted 3 months, but managed to get in at the doctors for another one from them whilst waiting for my next hospital appointment.

I wondered what other medication you can suggest to help me with managing the pain and symptoms. I am currently taking calcium / vitamin d tablets and cocodamol. I think if anyone else has the skin breakdowns what do you find helps most? I've tried sudacreme, talc, cavilon but it doesn't stop the flare ups.

Help gladly received... Thank you

Caz

2 Replies

oldestnewest
  • Hello Caz,

    Sorry to hear you are having a hard time. I can't offer much help, I'm afraid. So far, I have been spared skin problems, but have had sore and swollen joints - especially in my hands. The steroid injections I had didn't do much good, but the joints did improve when I was prescribed hydroxychloroquine and prednisilone - but this obviously needed a specialist opinion.

    It sounds sensible to be taking Vit D supplements.

    Hope things get better soon x

  • Hi there,

    I am sorry to hear that you are having such a difficult time. Have you been prescribed any other treatment for your lupus apart from the steroid injections? Are you taking hydroxychloroquine?

    We publish a variety of leaflets about lupus, and if you have issues with your joints, skin and fatigue you might find some of the following useful:

    lupusuk.org.uk/wp-content/u...

    lupusuk.org.uk/wp-content/u...

    lupusuk.org.uk/coping-with-...

    lupusuk.org.uk/wp-content/u...

    I hope your next appointment with a consultant will help you manage the condition.

You may also like...