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Stage 1 ~ 2 ~ 3 ~ 4 in sarcoidosis...what does this mean?

Posted , 23 users are following.

frustrated61
frustrated61

I was diagnosed with sarcoidosis in 2004.  I had a biopsy of the lymph nodes and lungs and it was there and in a bad way.  I was told I was in stage 4 of sarcoidosis and all I thought was...omgosh! stage 4 that means it's bad like stage 4 cancer is.  Can anyone help me understand what exactly this means?

Frustrated

2 likes, 29 replies

29 Replies

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  • vicky87908
    vicky87908 frustrated61

    Posted

    Hi, My Mum was 84, she died this week.  She has had sarcoidosis for the whole of her life - mostly in her lungs - and at stage 4 level.  She lived a full and active life as a ward sister, assistant matron and midwife.  She went out for long walks and enjoyed her grandchildren.  Yes, she had some bouts of chest infection, a weakened immune system and had used a number of medicines but many people have had pneumonia.  Aged 74 she visited Rome for the first time, then returned a couple of years later for a second time. 

    It never stopped her doing what she wanted to.

    • theresa36897
      theresa36897 vicky87908

      Posted

      Hi, I wanted to tell you I'm so sorry for the loss of your mum. I am stage II. Active in my life and hoping to be more active. Glad to know your mum was active and lived a full life.

      Blessings.

    • Katlis
      Katlis theresa36897

      Posted

      I'm I'm stage 2 and idk y I can't do much of any activity I can't hardly breath prednisone not helping if I do anything I'm down for 2 days sick exhausted pain wow great to know some people have good outcome but not yet for me

  • lynn52039
    lynn52039 frustrated61

    Posted

    I've had sarcoidosis for 17 yrs. My lungs are stable but my eyes flared up 3 years ago and now I get steroid injections every 3 mos in both eyes. My Pulmonologist told me to walk an hour everyday. I'm going to start doing that if that will help my lungs from getting worse. They have been stable for the entire disease. Praise, God! I don't know what stage I'm in. I just stay under my doctors care and follow his istructions. I have been stable for most of my disease until me eyes flared up. Not sure why they did after 14 years. Sends that steroids are the only relief.
  • Granny1957
    Granny1957 frustrated61

    Posted

    I didn't know it comes in stages explain to me what you mean thank you oh and how than know what stage your in granny
  • bert73173
    bert73173 frustrated61

    Posted

    The true answer to the question is that the disease Sarcoidosis does NOT have stages.  It may come and go and different parts may flare up.  It is the chest XRays of Sarcoid that have stages 1 -  4 and the explanation is correct.  This is from the Sarcoid physicians at New York's Albert Einstein and also Mt Sinai Hosptial both in New York,.
    • Granny1957
      Granny1957 bert73173

      Posted

      Thank you for telling me I have it in both lungs and move behind my liver started new there thanks again granny
    • Rodeomom
      Rodeomom bert73173

      Posted

      Bert just it all depends on the Dr as my husband was diagnosed in 04. They were not sure if what was wrong with him. When finding out he has sarcoids. His started in his liver which to them was odd. Now it's has progressed in the past 13 yrs. It's now in his bone marrow,liver,lungs,skin,and lymph nodes.

      They have him getting his eye exams every 6 months he is now on Mexatrate he is getting 20 mg at 25 pills once a week and this week his blood work and ct have showed no changes.

  • patricia84203
    patricia84203 frustrated61

    Posted

    Hi there!  I am just in the process of getting diagnosed. About 4 weeks ago I developed a cotton wool spot in my eye.  Along with the eye issue I was feeling sick.  My joints hurt terrible, developed nodules under the skin, short of breat, wheezy, cough, elevated liver numbers etc.

    Find out today for sure.  But looks like sarcoidosis.  My quesiton is.. are any of you able to work still?

     

    • tyagi
      tyagi patricia84203

      Posted

      Hi Patricia. I first developed Sarcoid when I was 40. Continued to work until I was 66. So yes, in answer to your question. Talk to the doctors and find one who knows about Sarc ( not many do!). Take the medication and keep active. It's easy to be overwhelmed, but there are a number of people on here who lead relatively normal lives, despite some awful symptoms. Good luck.

  • peter52775
    peter52775 frustrated61

    Posted

    Hi, I share your frustration, I was diagnosed in 06 also with biopsy from my lungs neck and throat. After my diagnosis I was told I needed no further treatment, then,,,,, in 2014 or 13 I collapsed with what appeared to be stroke like symptoms, 6 times now and after many arguments with so called doctors I have sarcoidosis in my lungs, throat, skin, nasal cavity, eyes and , in my bowels,, and possibly my

    Testicals, Up to now no one has mentioned stages of any kind even at the Royal Brompton hospital in London ,these guys are supposed to be the best in the country.

    Whether my collapses where strokes or not I'm still numb and weak down my left side and still suffer with blinding headaches all day everyday,,,it really is a nightmare of a disease...

  • patricia0523
    patricia0523 frustrated61

    Posted

    I am in stage 4 with this Sarcoidosis it started in my lungs in 2008. Now it is in my lymph nodes and my breathing has gotten really bad. My lung doctor has place me on oxygen that i have to sleep with at bed time and the portable one also. Please keep faith in god he will see us through. Be blessed
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