Advice to newly DX w/Lupus?

Discussion in 'Fibromyalgia Main Forum' started by jill5050, Aug 9, 2005.

  1. jill5050

    jill5050 New Member

    I have a friend whose 14 yr old daughter was recently DX with Lupus. They are going to a good children's hospital for more testing. Any advice for her? She already is a healthy eater and exercises regularly.
    Carlie
    [This Message was Edited on 08/09/2005]
  2. jill5050

    jill5050 New Member

  3. tcluna

    tcluna New Member

    low dose naltrexone seems to stop lupus. i suggest you look into it.
  4. JLH

    JLH New Member

    I am not a teenager; however, I have had lupus for 15 years.

    The only med that I have been on all this time has been Placquanil.

    If she does not have organ issues yet, all she needs to do is continuing heating healthy, exercise regularly, STAY OUT OF THE SUN, wear sunscreen daily or use products containing at least a 15 SPF to prevent skin damage--even if you are just going to walk from your car in to Wal-Mart on a partly cloudy day!

    Her rheumatologist will probably want to do lab work a urinalysis (to check her kidney function) at least twice a year, maybe more.

    When you start to have problems, it seems to be with the kidneys first. At least, in one support group that I was in, that was the way it was.

    I don't know about as a teen, but older people with lupus seem to get problems that go along with it, such as fibro, Raynauds Syndrome, and Sjogren's Syndrome. I have all of those.

    There are different types of lupus--which does she have?

    There is a discoid lupus, a systemic lupus, and I can't remember the other one. I have the systemic.

    I hope she gets along OK. 14 years old is TOO YOUNG to acquire a disease such as this!!!

    What were her sysmptoms that made her go to the doc in the first place?

    Take care,
    Janet
  5. jill5050

    jill5050 New Member

    Janet,
    She had a rash on her face that wouldn't go away. So through testing they discovered that it was Lupus. A shock to say the least. Thanks for your help.
    Blessings,
    Carlie