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Thread: diagnosed with discoid/profundus/mixed connective tissue

  1. #1
    Join Date
    Apr 2010
    Elm city NC
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    Default diagnosed with discoid/profundus/mixed connective tissue

    Hello I am 44 years old and was diagnosed with morphea in 2000. Scared me to death because the doctor didn't explain to me what it was except that it was a form of scleraderma. I immediatley started researching and put myself into panic attacks. In 2005 another dermatologist took biopsies and determined that I have lupus. I also have lupus profundus at this point. Everything is on my left side. Has anyone ever noticed that the problems run on one side of their body? I am scared that it will progress into SLE. I already feel that I have so many of the symptoms. Some days I feel like I can't put one foot in front of the other. Sometimes this will go on for a month or so and then all of a sudden one day I will wake up and it is like a blanket of fatigue has been lifted off of me. Usually when this happens I will find another small spot on my back or left arm that either has a hard nodule(on my left upper arm) or red circular patch (on the left side of my back) I also run a low grade fever almost all of the time. My regular body temp used to be about 97. Now it is about 99.5 most of the time. I also keep swollen glands in my neck. Also my legs, knees tops of my shoulders and now my wrists seem to ache for no reason. Where I have the nodules in my left arm it feels like a deep burning pain all of the time. Does any of this sound familiar to anyone who had either kind of lupus? I have not been tested for SLE since 2005. Those blood best came back negative for the ana .Whatever that means. But he told me they were inconclusive and that he needed to do more test. I was at his office for the testing when I got a call that my house was on fire and that it was a total loss including my 2 dogs. I haven't been back to the doctor since. Another question that I have is does anyone see a connection with mosquitoe bites and lesions? Wow, I didn't mean for my first post to be so long. I have had questions for so long. Thank you for letting me ramble. I would appreciate any input. THANKS.
    Last edited by pbozelle; 04-20-2010 at 09:23 AM.

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Hi Pbozelle;
    First, let me welcome you to our WHL family. Please do not worry about asking many questions, that is why we are here. I will do the best that I can to answer your questions and I am sure that others will be along to welcome you and to also address some of your questions.

    Lupus panniculitis, or lupus profundus, is a variant of Cutaneous Systemic Lupus Erythematosus that primarily affects the subcutaneous fat. There are deep, erythematous plaques and nodules, and some ulcers, which usually appear on thel extremities, trunk, breasts, buttocks, and face. Between ten and 50 percent of patients with lupus panniculitis will have or will eventually develop systemic lupus erythematosus.

    You did not mention if you were on any type of medication. Lupus panniculitis often responds to treatment with antimalarials, such as hydroxychloroquine (200 mg once or twice a day). Some cases respond to a combination of antimalarials (for example, hydroxychloroquine 200 mg and quinacrine 100 mg daily).

    It is not unusual to see this condition present itself on one side of the body. The reasons for this are unknown. While it happens to many, there are still those who have widespread Lupus Profundus. If the circular patches, that you are seeing, are indented, then it is possible that they are the result of the profundus where the fat in that area has been destroyed.

    Lupus is a disease that is replete with relapse and remission. This means that we have periods of time when our disease is active and we can feel almost incapacitated with pain and debilitating fatigue. Then, there are periods when our disease goes into a form of remission. This means that our symptoms have subsided and that we are able to feel almost normal. There is no way of knowing when these periods will occur or how long they will last. Lupus is a very unpredictable disease and is different for each person. The aim of treatment is to hopefully lessen the symptoms and prevent flare-ups (relapse). Also, it is very important for us to make appropriate lifestyle changes in an effort to help prevent flare-ups.
    LUPUS is an autoimmune disease, a type of self-allergy, whereby the patientís immune system creates antibodies which instead of protecting the body from bacteria, viruses and other foreign matter attack the personís own body tissues. This causes symptoms of extreme fatigue, joint pain, muscle aches, anaemia, general malaise, and can result in the destruction of vital organs. It is a disease with many manifestations, and each personís profile or list of symptoms may be different. LUPUS can mimic other diseases, such as multiple sclerosis and rheumatoid arthritis, making it difficult to diagnose by GPs as they see few cases of lupus and thus are not alert to its possibility.

    I have never heard of a connection between mosquito bites and lesions. However, it is a well known fact that Lupus patients are much more susceptible to insect bites and, quite often, our reactions are very severe and prolonged.

    I hope that I have been able to answer some of your questions. I am sure that others will be along with helpful information also. Please let us know if you need anything else, we are here to help you and want you to know that you are not alone!

    Peace and Blessings
    Look For The Good and Praise It!

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    pbozelle (04-21-2010)

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