The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Antibiotics for Sarcoidois with success

  • By redhulk · New reply 10:03 pm
  • Discussion in Living with sarcoidosis · 91 replies · Photos
  • I have had Sarcoidosis since 1995 and around 2006 i was prescribed Antibiotics for few months with good results, has anyone else been prescribed Antibiotics with success? I live in the UK ...

Sarcoidodis of the skin

  • By Meechiebaabee · Posted 9:13 pm
  • Discussion in Living with sarcoidosis · 0 replies
  • I been diagnosis with sarcoidodis of the skin even though it's no where as severe as having it of the lung. It had changed my life completely. My face goes through constant changes I will never look the ...


  • By DBrogan · New reply 9:06 pm
  • Discussion in Emotional support · 13 replies
  • Hello, Yes I started out with 7.5mg of trexall and I have been on it since January 2014 and now I am on 37.5mg 5 pills 1 day a week. The doctor and I decided together to keep increasing the dose b/c at ...

Blood Pressure fluxualtion

  • By BAF1946 · New reply 6:16 pm
  • Discussion in Symptoms · 3 replies
  • I noticed in the past month, since I have had my blood pressure taken a lot, that it goes up and down a lot. I forgot to mention this to my doctor. My normal is around 117 over 65 or so. this stays pretty ...

ACE level 114

  • By taziarm · New reply 5:21 pm
  • Discussion in Symptoms · 2 replies
  • I have enlarged lymph nodes in my chest and I have had several tests in the last two weeks, CT Scan, Xrays, PET Scan and now finally I reqeuested blood work from my doctor , she said that Lymphoma doesnt ...

A few days rest!

  • By BAF1946 · Posted 2:30 pm
  • Journal · 0 replies
  • June 27 & 28, 2015....Sat and Sun had a restful weekend. Had a head cold the settled in my chest so developed a chest cough. I never have a cough but this must have been the first time in ages my lungs ...

what can be used to clean your house with?

  • By nursesunshine1 · New reply 2:12 pm
  • Discussion in Living with sarcoidosis · 9 replies
  • I was told to avoid toxic chemical. Normal household cleansers( 409, ect) make me short of breath. I was wondering what everyone else is using? thanks karen ...

Has anyone had problems with Imuran causing repeated infections?

  • By Faith2003 · New reply 12:37 am
  • Journal · 5 replies
  • I am so thankful to be a new member of this wonderful group. I became sick with Sarcoidosis in 2003 and was officially diagnosed in early 2005 at the Cleveland Clinic. I have pulmonary sarcoidosis, neurosarcoidosis ...

06-27-15 Picture

  • By RonLS · New reply yesterday at 11:23 pm
  • Journal · 2 replies · Photos
  • Rock face at the top of John Blue Canon, Lovell, Wyoming Cragged erosion of the lichen covered rock face at the top of John Blue Canyon. With huge monolithic rocks seemingly stacked on top of the other ...

06-28-15 Picture

  • By RonLS · Posted yesterday at 10:59 pm
  • Journal · 0 replies · Photos
  • Big Horn Mountains northeast of Shell, Wyoming Storm clouds rolling over the Big Horn Mountains with the sun breaking through to highlight the jagged face of the mountain and truly revealing the true ...

06-15-15 Picture

  • By RonLS · New reply yesterday at 10:23 pm
  • Journal · 6 replies · Photos
  • Raven, Big Horn Mountains, Lovell, Wyoming Gliding by above the cold snow bank and exposed hillside a Raven glances down with weary eyes and gains altitude into the bold blue Wyoming sky. Even now when ...

moving to CA

  • By Wendylouz · New reply yesterday at 10:19 pm
  • Discussion in Treatment decisions · 2 replies
  • Hi I have had Sarcoidosis for 2 years. Now I'm moving to San Diego and i need to find a new Rheumatologist. Any suggestions ...

in hospital

  • By steplyn · New reply yesterday at 7:05 pm
  • Journal · 5 replies
  • Have not been on for a while. But have found myself in hospital for last 14 days. Lots of tests all coming back normal. Have been admitted due shortness of breath, pain in chest and back and my oxygen ...

Alberta sarcies

  • By Rae-bae · New reply yesterday at 6:11 pm
  • Discussion in Living with sarcoidosis · 4 replies
  • Just wondering if there is anyone in Calgary, Alberta that has a great sarcoid dr. they could recommend. I was diagnosed when I was 33 by my dermatologist when he checked the mark on my face and it was ...


  • By Thiwan · New reply yesterday at 3:47 pm
  • Discussion in Treatment decisions · 2 replies
  • I have two fungus balls in the upper lobes of my lungs. The doctors here suggest surgery/lobectomy to remove them. I want to know has anyone experienced this problem or surgery and what did you do ...

skin nodules

  • By nash5me · New reply yesterday at 3:12 pm
  • Discussion in Symptoms · 5 replies
  • I have lot of VERY PAINFUL nofules on my legs and they have been there for 3 months. Biopsy says granulomas, sarcoidosis is diagnosis of exclusion if everything else cultures negative. Has anyone had ...

Warrensburg/Lake George area?

  • By suzeekyu · New reply yesterday at 12:32 pm
  • Discussion in Living with sarcoidosis · 1 reply
  • I did a search and found several people in the Sarcoidosis community who live in my area (Warrensburg NY). Hoping to start a local support group - is anyone interested ...

I just thought I was getting old.

  • By BAF1946 · New reply yesterday at 7:13 am
  • Journal · 9 replies
  • 2012……went to the Doctors for routine checkup…..had a feeling of dread and anticipation in me. Told him I felt like I was going to die and I had lung pain. He put me on antidepressant meds. February 2013….severe ...

06-26-15 Picture

  • By RonLS · New reply yesterday at 1:15 am
  • Journal · 7 replies · Photos
  • Milky way over the Big Horn Mountains, Lovell, Wyoming Have you ever had one of those nights... or days when nothing seemed to go right? Well for me they seem to happen all too often, you can hear me ...

Light bulb moment

  • By SARCasm · New reply yesterday at 1:14 am
  • Journal · 7 replies
  • Have spent a good deal of time reading from this site as a new member of our "club". And I saw how I read everyone's experiences. I noticed the needs, feelings, confusions and questions, comparisons ...

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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About this community

The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Foundation for Sarcoidosis Research, an Inspire trusted partner.