Home Forums General Discussion Castleman's disease question

This topic contains 4 replies, has 2 voices, and was last updated by  Jan Lucinda1 8 years, 1 month ago.

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  • #304537
    Jan Lucinda1
    Participant

    I have a young relative who had Castleman's disease which is supposed to be an autoimmune disease.  She now has some RA symptoms.  Has anyone had any experience with Castleman's disease?  I had never heard of it until she was diagnosed with it.

    Jan

    #350015
    mschmidt
    Participant

    Jan,

    Welcome to RBF.  If you don't mind me asking, what type of Castleman's disease does your young relative have?  (Unicentric, or Multicentric?)  My understanding of the disease (which is limited), is that it affects the lymph nodes and other immune cell structures of the body. (in basic terms, an overgrowth of lymphatic cells in the body).  Infection with HHV(8) (human herpes virus 8) is associated with the disease, especially multicentric castleman's.  Has he/she been tested for that?  I don't remember it being classified as an autoimmune disorder but, again, I have limited knowledge of the disease.  I just had a conversation about it with my rheumatologist recently, who discussed what diseases she's encountered in her 20 years of practice. 

    How old is your relative?  It's unusual for a person under the age of 50 to have the multicentric type, as people in their 30's and 40's  tend to have unicentric, which can be removed.

    I'm not surprised you haven't heard of it, as it's a pretty rare disease!  Then again, I'd never heard of Scleroderma until I was diagnosed with it…

    Let us know what we can do to help. 

    Maria

    #350016
    Jan Lucinda1
    Participant

    Maria-

    THanks for the information.  Tammy is in her 30's and has had surgery so I think the tumors have been removed.  She is now having RA symptoms but hasn't got a diagnosis.  Tammy was told it is an autoimmune disease which surprised me.  I thought if it is, someone here might have had some experience with it.  Did your rheumatologist comment on this being autoimmune?

    Jan

    #350017
    mschmidt
    Participant

    Jan,

    I'm assuming that her doctor has done an autoimmune panel on her, and nothing weird is showing up in her blood?  My rheumatologist didn't say that it was an autoimmune disorder, just said that it was rare, and even though it's not cancer, it resembles cancer, and is often misdiagnosed as that initially.  Is she seeing a hematologist?  What specifically are her RA symptoms?  What part of the country does she live in?

    Sorry to be asking so many questions–just want to make sure I'm giving you the best answers to yours.

    Maria

    #350018
    Jan Lucinda1
    Participant

    Thanks again.  I'm sending a PM with answers to your questions.

    Jan

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