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    What to think?
    avatar
    Martine_D posted:
    Hello!

    First, I want to say I'm sorry for my bad english, I'm french and I dont have many occasions to practice. My question is : since many years I'm having joint pain, redness on my cheeks and nose going a bit up so it looks like a butterfly but not all the time and it's worst when I go under the sun. I dont talk about the extrem fatigue, hair loss, short time memory loss, looking for my words and a strange skin trouble. Years ago, the GP I had at that time told me it was nothing but I still dont know what it is : my skin open so I have an open hole but no infection and no pain! It's mostly on my belly but I've had it to on the top of my thigh. The GP told me it would go away by itself and it did but I have no clue what it is! When it's cold my fingers are frozen and if I touch someting cold I have what I call freezing pain.

    I dont mention almost daily migrain and I observed that each time I have a pain crisis, I have sores in my nose and on my small lips (that GP had told me to be a pimple in 2005 and I never asked again but had it every time I had a pain crisis). Just so you know, I changed GP in 2010 after being a week to hospital for sever back pain but a day before the GP said it was all in my head and finaly was osteoarthritis.

    I also often have swollen glands in the neck and had one removed 2 years ago. No cancer but it was not normal, it was ''granular". At that time, blood tests where ok. Last year I had enough and went back to a rhumatologist. She sent me for blood tests and I have inflammation and with the history, she think about lupus or spondylitis. More blood tests and I'm HLA B27 positive so she go for spondylitis and ask for an MRI to confirme but this one is not concluent.

    I've searched the web and found that it's possible to have lupus and be HLA B27 positive. Is anybody here is in that case? I'm actualy treated with sulfasalazine but no improvement. I alos take ibuprofen and dilaudid when the pain is just to much and I just cant cope with it anymore. A few of my friends that where nurses told me it looks a lot like lupus.

    Do you think I should ask my rhumatologist to consider lupus again even if I'm HLA B27 positive? Thanks for helping me see through it.

    Martine
    Reply
     
    avatar
    lupylisa44 responded:
    It sounds like you have a lot of symptoms of some sort of autoimmune disease. Have they performed any other blood tests like Anti-Ds-DNA or Complement levels (C3, C4)?
    I think you should definitely ask your rheumatologist to reconsider the diagnosis or find a new rheumatologist.

    You may want to keep a daily journal of your symptoms, your temperature and any other relevant information. If you get rashes, swelling or any visible changes, take pictures as evidence.

    the other thing that concerns me is that you are taking sulfsalazne. Most lupus patients are advised to stay away from Sulfa drugs!!!

    http://www.drugs.com/sfx/sulfasalazine-side-effects.html
    (look under hypersensitivity)

    http://www.med.ucla.edu/modules/wfsection/article.php?articleid=372

    http://thesearethefacesoflupus.com/Lupus_and_Drug_Allergy.html

    I wish you the best

    Lupylisa
    With love, with patience and with faith, we'll make our way.
     
    avatar
    Martine_D replied to lupylisa44's response:
    Thank you for your answer Lupylisa. Here in Montreal they dont give us our tests results. I know She asked for anti-DNA and a lot of other ones. For the sulfa drugs, she give it to me 'cause she suspect spondylitis and want to see if it's going to work but I doubt it since I see no improvment and I take it since more than 6 month now.

    I even stoped it for 2 month 'cause I had swollen glands without infection or fever. She asked me to stop the sulfa to see if it could be the cause but even a month after I still had swollen glands so it was not the sulfa and started back the treatment. My rhumatologist told me about a bio treatment if the sulfa dont work but it scares me. Would it be better to know exactly what I have before starting such a big treatment?

    Martine
     
    avatar
    klee1816 replied to Martine_D's response:
    I know it has been a month since you posted this, but I'm new to the site and thought I'd chime in here. I have both Lupus and ankylosing spondylitis along with a myriad of other diagnosis. I have found that the two are definitely not mutually exclusive! If you haven't followed up to revisit the Lupus with your doctor, I certainly would.


    Best of luck,
    Love and Health
     
    avatar
    Martine_D replied to klee1816's response:
    Thank you so much klee for your answer. I had my appointment with my rhumatologist and asked her about lupus. She told me that she though it was it and still but since it dont show in my blood results she cant treat me for it.

    I'll start on Simponi in 2 or 3 weeks for the spondylitis since the sulfa are not working. My rhumatologist told me that she would test me once a year for lupus so we'll see.

    Martine


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