I Have Pulmonary Sarcoidosis

Pulmonary Sarcoidosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Pulmonary Sarcoidosis. You're not alone. 17 People

    Steroids. The 1st go-to

    for Doctors'. But IS it the quick-fix solution? Is it in the best interest for the Patient? Steroids are not effective for Sarcoid, as it only stops the Sarcoid from getting worse. So they say. I disagree. As the PATIENT, I think the steroids do NOTHING. Weight gain. But...
    LibertyBell LibertyBell
    36-40, F
    1 Response Jan 22, 2014

    Fighting a Good Fight Yet Again...

    I wrote this years ago when I was at my worst physically... and now as I suffer again I am reminded of the wisdom I found in my struggles before...   It is a thief We all think we are safe We all think that in this refuge Nothing can hurt us And it is only after we...
    findingmywayhome findingmywayhome
    36-40, M
    1 Response Aug 14, 2009

    My Sisters Battle With Pulmonary Sarcodosis

    My sister Jacqueline was diagnosed with sarcodosis in the early 90's, it was treatable with prednisone and inhalants. It went into remission in the late 90's and all was well. Then it returned more aggresively. She was diagnosed with pulmonary hypertension and end stage of...
    lynn818 lynn818
    Jan 30, 2013

    Lofgrens Sarcoidosis Diary

    Start at bottom, please. April 10th, 2013 I forgot my fish oil tablets during the Easter holiday and started coughing, sweating, had no energy and was drowsy again. Obviously the combination of fish oil and D3, together with multi vitamins and minerals is working. I also drink...
    deleted deleted
    Apr 10, 2013

    Sarc Equals Pain And Misery...

    I was dx'ed in JAN 2007...oh yeah,I am also an AUSSIE living in PENRITH SYDNEY....age 45...female and fed up with SARC...also fulltime carer for disabled daughterwho has EDS and POTS.   Life couldnt get any better. Down here they catergorise SARC patients...my doc says...
    peacedreamer65 peacedreamer65
    2 Responses Sep 19, 2010

    I accept I have Sarc...but not that it has me!

    I have accepted the fact that I will have to take the steroids and narcotic pain meds and just give it to God.  I tried this fourth time and made it a month before the excruciating pain was more than the morphine could handle.  I will take them and be...
    2freeme 2freeme
    Aug 20, 2009

    I Think I Have Pulmonary Sarcoidosis

    For the last 12 months I have kept getting a flu, I have had many antibiotics so finally I asked the doctor to go further he DI all the blood tests and ct scan , said i had lung cancer 6 months at the most. They then sent me for full bone scan came up clean except for arthritis...
    borne888 borne888
    Jul 8, 2010

    5 Years With Sarcoidosis

    I was diagnosed 5 years ago with Sarcoidosis.  It started in my lymph nodes and my lungs and they feared it was lymphoma... so I had a biopsy done immediately.  The worst part of the disease is not knowing what will happen next or how you will suffer. The disease ended...
    findingmywayhome findingmywayhome
    36-40, M
    8 Responses Aug 11, 2009

    Chronic Sarcoidosis

    I have been living with sarcoidosis since 2003.Its been a rough and tiresome journey.I'm in pain almost everyday.I have it on my lungs,spleen,abdomen,liver,skin,joint and recently found out its in my bone marrow.I try not to stress about it and live the best I can with the hand i...
    MsMaddie MsMaddie
    51-55, F
    1 Response Sep 21, 2013

    Why Me?why So Much Pain?

     I suffer with a Lung Disease.Its called SARCOIDOSIS. (Its painful for me)   SARCOIDOSIS is an inflammatory disease characterized by the presence of NONCASEATING GRANULOMAS (collections of inflammatory cells/lumps that do not pus)that form SMALL LUMPS in multiple...
    LibertyBell LibertyBell
    36-40, F
    14 Responses Feb 5, 2009
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