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

Disappointed In The Cleveland Clinic

  • By minerva · New reply 10:34 am
  • Discussion in Living with sarcoidosis · 91 replies
  • No. I did not expect miracles, I did however, expect more knowledge about Sarcoid and less assembly line treatment. I don't want to go into the long details but I am not at all impressed by their pulmonary ...

My latest tests and the phone call x x x

  • By juliek1962 · New reply 10:11 am
  • Journal · 3 replies
  • On Tuesday 24th March i went to the hospital for my latest test, The tube test, to check my food pipe and the opening to my tummy. And the 24 hour tube test to check my Acid in tummy etc. I was not looking ...

sarcoid and pulmonary hypertension

  • By saksfifth44 · New reply 9:05 am
  • Discussion in Help desk · 44 replies
  • I'm back again asking this time if anyone has heard of a medication for pulmonary hypertension called Letairis ...

ACE Numbers - Angiotensin Converting Enzyme

  • By MattSafari · New reply 8:16 am
  • Discussion in Symptoms · 10 replies
  • I'm curious to know how the ACE numbers run for folks with sarcoidosis. Does it ever get back to normal? What is a normal ACE high? How high is too high? When I received my sarcoidosis diagnosis, my doctors ...

It's a long lonely aggravating road.

  • By BamaDad · New reply 3:24 am
  • Journal · 11 replies
  • It's been a while since I made a journal entry. My wife, BamaMom is in advanced stages of Sarcoidosis. She has has 3 surgeries in less than three months. Her Sarcoidosis went on full attack mode on her ...

Building Vandalism

  • By FandAM · New reply 2:33 am
  • Discussion in Emotional support · 6 replies · Photos
  • Please note that I have deliberately sent this to the public as it is not health related. One of our community buildings was vandalized in a hate crime. Several hostile warning symbols were sprayed onto ...

Too much Vitamin D is dangerous

  • By mary2730 · New reply yesterday at 11:06 pm
  • Discussion in Living with sarcoidosis · 74 replies · Photos
  • This is something I found on the Inspire arthritis board. There's often something in the news about low levels of vitamin D being linked to all kinds of health problems. Now there's one that says too ...

heavy heavy legs

  • By saksfifth44 · New reply yesterday at 9:33 pm
  • Discussion in Symptoms · 10 replies
  • Does anyone have heavy heavy legs. Can't seem to walk well feels like I'm being pushed down.Anyone know what causes this. I have pulmonary sarc... Can't seem to get any answers about the legs ...

Sarcoidosis Video

  • By FrankRivera · New reply yesterday at 9:23 pm
  • Journal · 4 replies
  • Here is the link to the Sarcoidosis video I made. Hope you like it! ...

03-26-15 Picture

  • By RonLS · New reply yesterday at 4:00 pm
  • Journal · 3 replies · Photos
  • It's a bug's life, Teton Village, Wyoming Last summer we took the Jackson Hole Tram to the top of Rendezvous Peak (10,450 ft) and just off of one of the paths was this little alpine flower growing tall ...

hair loss while on Remicade and perdnisone

  • By vmccarrey76 · New reply yesterday at 3:28 pm
  • Discussion in Treatment decisions · 3 replies
  • Hello, I have Neurosarcoi and TM I have been on Prednisone since 2012 and a lot of other meds Cellcept is on of them. I am on 3000mg/day and I am going to start Remicade infusions in 3 week. I am worried ...

Lung Sarc with Cold and allergy season

  • By JulieS62 · New reply yesterday at 2:01 pm
  • Discussion in Living with sarcoidosis · 12 replies
  • I would be interested in tips others have on how to stay healthy (reduce symptoms) of lung Sarc during cold and allergy season. I work around people with developmental disabilities. I take Arava, Humira ...

Texas support group Dfw

  • By eadams · New reply yesterday at 1:20 pm
  • Discussion in Living with sarcoidosis · 4 replies
  • Anyone in the DFW (Dallas texas) with sarcoidosis? I started a support group for this area because there were none! We are having our first sarcoidosis walk April 25!!! for more ...

Laryngeal Sarcoidosis

  • By mamamac719 · New reply yesterday at 12:09 pm
  • Discussion in Living with sarcoidosis · 5 replies
  • My 13 year old daughter has been diagnosed with laryngeal sarcoidosis. I am looking to connect with others who have the same diagnosis and talk about lifestyle changes, supports, and treatments. She is ...

Cellcept or Myfortic for sarcoid?

  • By BC600 · New reply yesterday at 11:42 am
  • Discussion in Treatment decisions · 6 replies
  • Has anyone had a dr. Suggest Cellcept or Myfortic , or has anyone tried these meds for sarcoid? I was told by my Dr. that it's suppose to retrain your immune system so it stops attacking your body. From ...

Living w/ Sarcoidosis

  • By BC600 · New reply yesterday at 2:21 am
  • Journal · 3 replies
  • I was diagnosed w/ sarcoid in my lungs in 2009 by mishap when I went in for a C.T. for kidney stones.Prior to that I had been complaining for several yr.s to the Dr.s about feeling rundown,weak,weight ...

A new development

  • By grawns · New reply March 27, 2015
  • Journal · 15 replies
  • Hi all just wanted to give a quick update and would appreciate all feedback, was back with the eye specialist today and it turns out I have now developed a cataract in my right eye, I'm really shocked ...


  • By GMitt · New reply March 27, 2015
  • Discussion in Treatment decisions · 3 replies
  • Is anyone taking this for neuro-sarcoidosis and what do you believe I can expect from this treatment ...

24 Hour Kayak World Recrod to Raise Awareness for Sarcoidosis

  • By steveausable · New reply March 27, 2015
  • Discussion in Living with sarcoidosis · 8 replies
  • My name is Steve Corlew and I am a former US Kayak team member and avid paddler. Recently, I was diagnosed with an auto-immune disease called Sarcoidosis. I will be attempting to break the 24 Hour World ...

Sarcoidosis Today Magazine!!!!!!!!!!!!!!!!

  • By LovelySnowflake · New reply March 27, 2015
  • Discussion in Living with sarcoidosis · 3 replies · Photos

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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.