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Thread: Timus Lupus and Rare hemoglobin disorder

  1. #1
    Join Date
    Dec 2013
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    Default Timus Lupus and Rare hemoglobin disorder

    Hi my name with Amie and after months of attempting to find out the mystery rash that I began at my hematologist, because I was feeling very symptomatic of my Kokomo Hemoglobin, he who ran all the test for SLE which can back negative. I have a effect hemoglobin of 55% due a mutation in my beta chain. He eventually gave up and sent me to a dermatologist. Because of the steps that I took to bring it under control (prednisone, layers, sunblock and the summer heat had ease) she was unable to perform a skin biopsy and requested I call as soon as I broke out; which I did approximately a month ago. She fit me fit me in right away and after over 2 weeks of waiting I was diagnosed on Monday with Timud Lupus. I am interest on information on LET, the medication of Plaquenie, and it's effects on your bodies, and curious if there are traditional fellow lupus sufferer that have a hemoglobin disorder similar to mine.

    Thank you in advance for your input and consideration to my questions is appreciate.

    Thank you,


  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Tumid lupus erythematosus is a rare but distinctive entity that is characterized by plaques that appear on patients trunks. Tumid lupus symptoms may be either acute, that is developing dramatically over days, or sub-acute, which takes weeks to develop. Initial symptoms of tumid lupus appear in the lower back pain and in the legs. Several patients have reported experiencing muscle spasms, a general feeling of discomfort, headache, fever, and a loss of appetite. The disease is likely to affect the proper functioning of the spinal cords. Depending on which parts of the spinal cord are attacked, certain patients may experience respiratory problems.
    LET (Lupus eurythematosis Timudis) is different from discoidal, subacute, or cutaneous Lupus. It is a sun sensitive disorder usually ocurring on the trunk of the body in areas subjected to the sun. It presents with lesions that are red, inflamed and/or raised, and often hard/crusted.
    An active tumid lupus outbreak typically involves the appearance of a red, dry patch of skin. The rash usually does not itch, though it may be tender and cause radiating heat and pain. Raised bumps or ring-shaped lesions may be present as well. Other possible symptoms include easy fatigue and exhaustion in warm weather, headaches, and joint pain.

    Since tumid lupus is a rare condition, it may be difficult to obtain a proper diagnosis right away.There is no cure for tumid lupus, though medications and lifestyle changes can provide significant symptom relief. Patients are instructed to avoid known triggers as best as possible, such as staying out of the summer heat and wearing protective clothing and sunscreen when venturing outdoors. Corticosteroid creams are often prescribed to ease pain and redness during an active attack. Some patients spontaneously get better as they get older, but tumid lupus requires lifelong treatment for the majority of people.

    Therapy should be an integral part of the treatment process of tumid lupus. In case of permanent disabilities resulting from lupus related symptoms, it is important for ALL lupus patients, including those dealing with LET, to participate in some forms of long-term rehabilitative therapy. Lupus health care specialists are the best sources for information about treatment programs and other therapy resources. Rehabilitative therapies are often the most recommended therapies because tSee more at: http://www.drgaryslupustrehey include strategies for carrying out activities in new ways in order to overcome lupus related disabilities. As of now, rehabilitation alone cannot eradicate the damage caused by tumid lupus but rehabilitation can help patients become functionally independent.

    I hope that this has been helpful and that someone with experience with this disorder, responds to you. I wish you the very best.

    Peace and Blessings
    Look For The Good and Praise It!

  3. The Following User Says Thank You to Saysusie For This Useful Post:

    steve.b (12-06-2013)

  4. #3
    Join Date
    Jun 2013
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    Hi there!
    I have SLE/SJOGRENS overlap. Last year I had a rash on my thigh which my dermatologist couldn't identify. He said that it was tumour like and may be lymphoma or cutaneous metastes. He biopsied it and the pathologist said that it was LUPUS tumidus. I also developed a malar rash on my face which was quite different in appearance. Once I started on Plaquenil the tumid rash cleared very quickly and hasn't been back. The malar rash also cleared but more gradually.
    In November I developed a very itchy flaky rash on my back,trunk and legs. My dermatologist said it was a LUPUS rash (subscribe cutaneous I think) and treated it with topical steroid cream and balium for any general itching I might get.
    That rash has cleared too though my dermatologist warned me to be ready for anything that LUPUS might throw at me!
    I don't know if this helps. I hope so.

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