Sarcoidosis Support Group

Sarcoidosis is an immune system disorder characterised by non-necrotising granulomas (small inflammatory nodules). Virtually any organ can be affected, however, granulomas most often appear in the lungs or the lymph nodes. Symptoms can occasionally appear suddenly but more often than not appear gradually.

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  • Chargar

    Trying to learn to live with sarcoidosis

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    I became sick the end of Feb 2017 with what I thought was the flu. It would not go away and only felt better when they have me steroids. Did a chest Cray the middle of March and there were over 100 granulomas in the lower part of both lungs. After a biopsy they confirmed it wasn't cancer or T B. Was diagnosed with sarcoidosis. Have been on steroids since and am waiting for approval for H.P....
  • countryheart

    New victim of sarcoidosis (lungs)

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    I am a new victim of sarcoidosis (lungs). I have two lumps one is 3cmx2cm and is inside the tube (bronchioles) and second is between the lugs/tubes and is 3cmx3cm.June 15, 2017 I woke up with a big pain in my chest, I went to emergency and they said I am fine (blood work, x-ray, heart all good), next day the same big pain in my chest went to emergency and schedule my family doctor appointment...
  • Kre8tive1

    New to this group...Sarcoid survivor 20 years

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    Hello to all...I was diagnosed with sarcoidosis in 1997 after having several bouts with pneumonia and losing alot of weight.  It affected my lungs, skin and eyes.  I took steroids for many years and I went into remission in 2001.  In 2009 I began to get numbness and weakness on my right side so I went to the emergency room fearing I may be having a stroke...No..the sarcoidosis returned and...
  • cableman

    surviving

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    The days get longer, as I get older. Now 51 and still fighting the sarcoid.   With sleep apnea and severe pain constantly. the doctors can do nothing. They try sending me to specialist, just so I can pay more deductibles. But they do nothing. Soon the pain killers, and other meds will kill my kidneys. There is really no help. For those who don't have it in their skin, you are truly blessed. In...
  • Love1965

    Living with the Vp shunt

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    I am new to this site I was diagnosed with Sarcodosis  on the Brain, last year I got really sick with a bad headache, my brain was feeling up with fluid and swelling. I was air lifted to a hospital about 2 hours from my hometown, the doctors had to drill a hole in my brain to relieve the fluid and stop the swelling, a week later I had brain surgery to install the vp shunt, I have not had a...
  • sonnycamehome

    A new...thing

    Hi All!I hope everyone is in good health and good spirits!I'm wondering if anyone has ever had a sarcoid growth or granuloma underneath their skin?I have a growth under my skin on the tip of my index finger. It feels round and hard, and is about the size of a metal BB for a BB gun.I'm thinking it's a sarcoid granuloma, but I'm not sure, and I'm wondering if anyone else has had any similar type...
  • Long-journey

    Diagnosed with Sarcoidosis 2006

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    This has been a long journey sometimes it gets hard for me but I  have to keep the faith and move on. Before I was diagnosed I kept getting pneumonia  I had it 5 times back to back. I went from doctor to doctor in my hometown in Louisiana. The night sweets wake up clothes soak and wet and had to sleep sitting up when I lay flat I wake up gasping for air. The knots come all over my leg...
  • Tab

    ANYONE HAVE........?

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    I have sarcoidosis in my leg muscles.....anyone else ?
  • JenElwa

    Newly Diagnosed and So Very Sick

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    Hello, what a journey I've been on!  I became very ill in early January: daily excruciating headaches, weak, faint, absolutely no energy, weight loss, temp fluctuations, chest pain, and the struggle with sleep I'd had for years turned into a constant need for rest to try and recharge. I was out of breath just getting dressed. I thought maybe I had a weird virus so I tried to baby myself to see...
  • canadadry

    Night sweats.

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    I am wondering if anyone else has this problem. I have night sweats which is starting to get a lot worse. I now wake up every early a.m. and can't go back to sleep for a while. I have Testosterone therapy for love T. I still have the night sweats.Someone once stated that night sweats can be from cardiac problems. Now I am starting to wonder.I am getting scared that this could be a cardiac...
  • So_Many_Ants_Outside

    Question About These...

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    I have had this increase over the years. It doesn't impede me, but still I wonder if it's what this forum is about. I will cough and have hardened stone-like things appear. Sometimes they are already at my throught level. Other times I must cough hardly, like I mentioned. Is this what is going on?
  • Pegs

    Pulmonary sarcoidosis/pipeline drugs

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    Hello Everyone, My name is Peggy Rogers. I'm new to this forum. I've recently been diagnosed with pulmonary sarcoidosis. I'm on 30mg prednisone. However I still have burning chest pain. I'm going to see a top sarcoidosis specialist in Charleston SC at the sarcoidosis center. I'm considering all my options. There are promising drugs in the pipeline by pharmaceutical industry. I found 2 companies...
  • Amydwils72

    Husband diagnosed with Sarcoidosis

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    My husband was diagnosed with Sarcoidosis last year and has seen a doctor but hasn't had any treatment.  He is now coughing a lot and coughing up blood and having a hard time breathing.  He is in Kansas working and I am in Florida and I am worried about him. He doesn't want to take any medications because of everything he has read on the blogs.  Any suggestions?  
  • QueSeraSera

    Sarcoidosis support

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    Any recent posts regarding pulmonary sarcoidosis?
  • deleted_user

    sarcoidosis and aloe vera mps supplements?

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    I was told by many that the herbal supplement aloe vera mps was good for inflammation and boosting your immune system. Does anyone know anything about this? Has any one taken this at all? Can you tak this medicine while being on prednisone? Or do you have to be off prednisone in order to take it safely? If any one knows anything about these questions I would love to hear your input. Thanks again.