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  1. #1
    Join Date
    Jan 2014
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    Default New member with SLE. Questions!

    I have been battling an AI disease for 15 years. I have seen more doctors than I care to put a number on. I was finally diagnosed 2 years ago. There are so many things going on with my health that it would take up this entire forum to list. I have recently had one issue arise that truly caused enough concern to take me to the ER.

    Christmas Eve morning around 6:30 am I awoke to a bubbling feeling in my throat. I got up and went to try and cough it out. Blood(fresh and clots)pouring out. I went to the ER. After an EGD(all clear) a bronchoscope was done where they found lots of clots inside my lungs. Took biopsies. No cancer. But the lining(3/4 of each lobe)of each lung was major red with inflammation. All they can tell me us that it was part of the lupus.

    Has anyone else experienced this?

  2. #2
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    You might want to have your potassium checked. When mine gets low my hand gets numb/tingles and often I have happen what you described.

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

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

    Saysusie (01-28-2014)

  4. #3
    Join Date
    Nov 2010
    Philadelphia, PA
    Thanked 93 Times in 65 Posts


    Hi Mari, are you sure you wanted this reply to go to bridges and not MoniqueH, about her hand cramping?

    I'm so sorry a_bridges that you are going through this, it must of been so scary for you! I hope you find answers ASAP. I've heard of Lupus attacking the lungs as a matter of fact there is a name for it, at this moment I'm having a brain fart so I can't remember. I suggest you make an appointment with a Lung doctor and get a full check up soon. Hopefully they can find out and start treating you.
    Diagnosed in 2010 with SLE, recurring pericarditis, pericardial and pleural effusions. Fibromyalgia, Avascular Necrosis on both knees, IBS, Gastroparesis, migraines, DVT's, Pulmoray Emboli. Arthritis, pinched nerves and bulging disk all on the neck. Hyperthyroid issues. Neuropthy, anemia and insomnia "taking it one day at a time, what more can I do"

  5. #4
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    In Lupus, there is a rare disease known as acute lupus pneumonitis. This is caused by inflammation in the lungs, and may cause shortness of breath, rapid breathing, cough, and even coughing up blood. Your doctor will need to examine the lungs carefully and may hear abnormal lung sounds that help tip off this diagnosis. In this case an x-ray or CAT scan will be helpful in making the diagnosis, and your doctor may want to get breathing studies or pulmonary function tests (PFTs) to quantify the lung function and extent of disease, if this is indeed the issue that you are having. A lung biopsy may be necessary in some cases, and sometimes a bronchoscopy may need to be done to rule out an infection. This condition is generally treated with with prednisone plus azathioprine therapy.

    I would suggest that you insist that your doctors test you to find out exactly why this event occured. Left untreated, it could become quite serious. Please do so as soon as you can. Let us know what was found and how they decided to treat it. I wish you the very best!

    Peace and Blessings
    Look For The Good and Praise It!

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

    chikititalinda (01-28-2014)

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