diffuse bone marrow change

I have had Lupus and Hughes Syndrome for the last 30 years.About a year ago I was diagnosed bone marrow change in my left knee and after several MRI scan,doctors told me that this condition is everywhere included the spine.Doctors don't know what it is ,they said there is a vast literature about this problem on the internet associated to Lupus or Hughes Syndrome,but this is not true,because although Lupus is mentioned,the condition is always associated with cancer,that my doctors have excluded.I' m I an alien? Can you please help me? Thank you.

4 Replies

  • Hi where are you located, we need to know in order to help you more efficiently, welcome by the way. This is a bit wordy but discusses the area you are interested in, did they give you a specific name for the type of change? cdn.intechopen.com/pdfs-wm/...

    and lupusresearch.org/news-and-... If you give me more detail I will do a more fine tuned information search for you.


  • I live in South London and i am seen at St.Georges hospital.Doctors that follow me don't have a name for the problem,they usually say: Indeterminate diffuse marrow abnormality or haematological marrow pathology. They are not sure yet if this condition is dangerous,i continue my immunosuppressant therapy for SLE and APS that is: 5mg Prednisone,2g CellCept,400mg Plaquenil.Positive ANA and Cardiolipin.Anti Dna was 70 a while ago ,previously was very high(about a year ago was 240).

    Thank you for taking the time to answer me.Please ask doctor Hughes,doctor Hughes maybe can talk to my doctor Dr A.Kaul.Thank you again.

  • You would have to set up that conversation, maybe your doctor could contact the London Lupus Centre for advice, but not being his patient, I can't do that for you. Does you current doctor have experience of Hughes Syndrome/APS etc, I am guessing they do. Our list of specialists is here: hughes-syndrome.org/self-he...


  • I know that Dr Kaul knows Prof Hughes so you need to ask him to speak with Prof Hughes about your case if you are worried. You could send an email to London Bridge but your Doctor will need your permission to speak to anyone about you so you need to discuss this with him first.

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