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    Help Please
    Amanden posted:
    Hello all, I haven't been here in a while but I know I can trust you all to help as between the bunch of you I believe you have every doctor on the planet beat. For the last 6 months or so I've been having a lot of troubles breathing. I've had chest x-rays, breath tests, stress tests etc. I've tried advair, salbutamol puffers and nothing seems to have any effect. I've asked my rheumy and he just puts me off to my family doctor saying it's not lupus related but I've read that it's quite common to have lung issues with lupus. Has anyone else had this and if so, how did you get relief? Thanks in advance for all your help.

    sghouse responded:
    The only time I have had trouble with my lungs is when I get Plurisy!!! Have you been checked for that. I know I had to go onto a lot of drugs but what did help is when they raised my steriods I ended up in the hospital twice with that and Periocardial.The Rheumy should not just shirk you off but sometimes the family doc will listen a little more than your rhuemy:( I hope you feel better and do not take NO for answer it is after all your body and you know the best as to what is happening.
    allie_bf responded:
    My rheumatologist will refer me back to my primary care or pulmonologist for lung issues other than the very mildest and most straightforward episode of pleurisy. If you haven't seen a pulmonary doc yet, maybe this is the time to start, especially since you're having no luck with the usual inhalers. Lupies can have a number of lung problems: interstitial lung disease, pulmonary hypertension, and pulmonary embolus. Those who also have the antiphospholipid syndrome are particularly at risk for emboli and pulmonary hypertension, but others can get it, too. ILD is more common in lupies who also have Sjogren's or mixed connective tissue disease.
    HG1948 responded:
    I had very serious lung issues. I believe that the prednisone I was given for my lupus, helped manage my lungs inflammatory lung problems.

    Be sure not to take Advir. My internal medicine doctor told me that for some patients it can be a deadly drug to use.

    ycyoung responded:
    omg! i can relate to you! This last year has brought on: Breathlessness, pain when i inhale, hurts in my chest cavity, shoulder/neck/upper back pain. Ive had CT scan/xrays/ resperatory tests that have showed nothing. Echogram scheduled next week. Ive felt strongly that its in my lungs but tests show diff. I have a raspy voice, cough, fatigue, chest rash sometimes on my face, terrible shoulder pain still in phys therapy for.; trouble sleeping; dizzy spells; sweats; freezing fingertips. So far my Pulmanologist Dr cant find anything and is going to send me to a Rheumatologist..for possible Lupus symptoms.. Does any of this sound familiar to anyone...??? I am mid 40s, female...
    Im very frustrated as my daily life has a dent in it !
    HG1948 replied to ycyoung's response:

    Gee I don't know about your symptoms being lupus. Some lupus patients experience experience joint pain, pain in the area of their chest, rashes and fatigue. A raspy voice, cough, sweats, dizzy spells, freezing fingertips are not problems generally associated with symptoms caused by lupus as the "primary source". Lupus can of course attack any and every organ system in your body, resulting in many "secondary" medical problems, some life threatening.

    Seeing a rheumatologist is a great idea! Don't despair. Your at last being placed upon the right course to get to the answers and to the medical help that you need. For the next few months, try doing what I "settled for doing"....being grateful for just getting symptom relief, at least for some of them.

    I was in my 40's during the years my first symptoms of serious illness appeared. My doctor's and I were trying so hard to figure out what all of my different symptoms meant. I realize that telling you to not feel frustrated is useless, when you are in a frustrating situation! Therefore, I am going to say, just try to "hold on tight" to the belief that answers exist and they just have to be found.

    Good luck to you.

    Amanden replied to HG1948's response:
    Sorry, I already know I have Lupus, I was diagnosed 4 years ago. That is why any little thing that goes wrong is first blamed on lupus when docs don't know what is going on. Thanks for all your replies everyone.

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