Pre diagnosis Lupus

Hi, I've joined this for support. My daughter is nearly 12 and has been poorly since January. After many GP, hospital consultations we finally saw a rheumatologist yesterday and they have indicated she may have Lupus. They are testing for C1 Esterase inhibitor and full bloods again, plus liver function and she is going for ultrasound and MRI next week due to chronic pain and swelling in her joints and muscles; particularly hands, wrists, groin and knees although the pain moves around and in her chest. She has chronic idiopathic urticaria and are positive she doesn't have rheumatoid arthritis or other autoimmune diseases. They have put her on morphine with paracetamol for the pain to get her comfortable, and she takes 2 anti-histamine a to control the rash but mainly stop the itching. She is being referred to a specialist rheumatologist in Leeds. She has so many symptoms, and it affects her mood; she gets very low. I hope it is just chronic urticaria but they have indicated it may take years and trial and error to get it all under control. I have read a lot about Lupus and asked very early on if it could be Lupus due to the many symptoms and I know she is relatively young but is starting puberty.

I suppose I have no questions, but wanted to share and get some support.

1 Reply

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  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    Systemic lupus erythematosus is an autoimmune disease which mainly affects women during their child bearing years, although men and children can develop lupus.

    This must be a very worrying time for you and I can understand your needing to know what is happening. Unfortunately, diagnosis can take time since there is no single blood test that can diagnose lupus.

    It is not surprising your daughter is feeling low - and perhaps you are also feeling anxious and worried. Therefore, we are here to support both you and your daughter.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    With good wishes!

    Ros

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