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Thread: I have lupus sle, raynauds, vasculitis and also developed lung problems.

  1. #1
    Join Date
    Apr 2013
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    Default I have lupus sle, raynauds, vasculitis and also developed lung problems.

    I now have breathing problems for the last 5 years since I was hospitalized with SARS in Dec 2007. It caused scarring and some pulmonary fibrosis along with broncheastasis and now I have chronic asthma as well. Always had allergies and I have to have special diet because of allergies to sulfites, pork, eggs and milk. Also I have allergies to most food preservatives, expecially sulfites, sulferdioxide, Hamburger meat that has been processed. I have to have everything with a label, even my asthma inhalers. I also now have the shingles and take a valtrex (antiviral) daily to keep them at bay. I have severe Urticarial vasculitis and some Leukocytoclastic vasculitis, but do much better now since I am on plaquenil. I recently fired my rheumatologist because she wanted to blame everything on my asthma, but my asthma is also a result of the Lupus and being my immune system allowing me to catch SARS, when most will not even catch it unless immune compromised. Both of my younger siblings have died as a result of SARS, One in 2008 at the age of 47 and one last April at age 51. Doesn't seem right that there really isn't much mention of this in the news. I have asked countless Drs and they say that this does happen. I use advare for my breathing problems and it helps a lot. I also have anxiety/panic attacks now from just things I guess that have frazzeled my nerves over the years. I can't work and I am currently applying for SSDI. I've worked hard most of my life but now that is not possible. I also had thyroid tumors at the age of 8 yrs old and had a thyroidectomy at age 11. Hashimotos disease. This all runs in my family. My sister have this too. One also has sjogrens and graves disease that has recently come back on her. One brother was diagnosed with Lupus that passed away. THey were twins, I think they both had Lupus, but one didn't get as good of medical care. My Immunologist save me. My white count got to 19,000 with the double pneumonia. I never coughed. I have worked every year to build myself back up. I think I've been better each year except the shingles are very bad, Meds help them but I wonder how long I can take the meds and when can I get B12 shots or something to build me up. Any ideas? Anyone...I am open to all ideas. I take plaquenil for the Lupus and that is all I take for it, After 37 years, I got plaquenil 5 years ago.

  2. #2
    Join Date
    Mar 2011
    pinjarra, western australia
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    hi jill, sorry I have no advice, but I did want to know that we are here, and we do listen.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

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