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

How to get Dulera on Humana/Tricare Prime (military).

  • By survivor58 · New reply 11:19 am
  • Discussion in Living with sarcoidosis · 2 replies
  • I have been trying to get Dulera for over a month. My pulm gave me the script because Fovent stopped working. When I took it to the military facility then the CVS pharmacy they would said I had to try ...

Anyone on Imuran for Sarc?

  • By imalou · New reply 10:57 am
  • Discussion in Treatment decisions · 5 replies
  • Hey everyone, On my visit last Friday with the pulmonologist he said based on my symptoms and my x-ray, it indicated my Sarc was worse when compared to last year's x-ray, also my breathing test confirmed ...

Neurosarcoid in the spinal canal?

  • By mcash · New reply 10:45 am
  • Discussion in Living with sarcoidosis · 10 replies
  • I am fairly new to this site so forgive me if this question has already been answered before and I'm overlooking it. I have been told since August 2010 that sarcoid is pretty rare but typically if you ...

Taste changes

  • By Chime · New reply 9:46 am
  • Discussion in Living with sarcoidosis · 1 reply
  • My husband has now been on leuflumomide for about three months. He has a bitter/metallic taste after a few bites of food. The only foods he seems to be able to enjoy more than a few bites of are either ...

Manitoba Canada

  • By MaggieBourge · New reply 7:35 am
  • Discussion in Living with sarcoidosis · 2 replies
  • Diagnosed in 2000. Am trying to connect with other sufferers in my area. Please private message Maggie Bourgeois on Facebook. Or reply here ...

Antibiotics and Sarcidosis

  • By Kecia87 · New reply 2:13 am
  • Journal · 9 replies
  • Back in September I was diagnosed with pulmonary Sarcidosis. Over the weekend I went to the hospital for an infection I am currently battling with. The ER provided antibiotics for me to take. Today is ...

Life and Death

  • By bulldogwinston · New reply 2:09 am
  • Journal · 6 replies
  • When we shy away from death, the ever- changing nature of things, we and inevitable shy away from life ...

New Labs and symptoms prompting more tests

  • By imalou · New reply 1:23 am
  • Discussion in Treatment decisions · 26 replies
  • Hi everyone, Well, I had my appt today with the oncologist/hematologist and had the usual labs. good news on the potassium, the prescription brought it back to normal ranges, however now my calcium is ...


  • By Patdave · New reply 12:12 am
  • Discussion in Symptoms · 7 replies
  • Does anyone experience nausea with their sarcoidosis ...

Left shoulder pain

  • By Abazar911 · New reply yesterday at 11:37 pm
  • Discussion in Symptoms · 15 replies
  • Hi, Before I was diagnosed I started with severe shoulder pain. "Tons" of floaters in right eye per opthamologist on Tuesday. Being watched for retinal detachment. Mild cough today. Still seeing light ...

Acthar Get

  • By Pennegrl · New reply yesterday at 9:03 pm
  • Discussion in Treatment decisions · 5 replies
  • Does anyone have any experience with Acthar Gel as a treatment for Sarcoid? I am currently using 2 injections per wk and its an up down effect some days are very good and some not so much and I am coming ...

Odd Pains before Flair up?

  • By Kerrieichenberger · New reply yesterday at 8:08 pm
  • Discussion in Living with sarcoidosis · 4 replies
  • OK, I need to know If I'm the only person in the world who's body is self destructing. Has anyone noticed getting extreamly painful pains... Like in your breast, underarms, neck & cramps in the legs right ...

Support group


Need advice please

  • By clintcodi · New reply yesterday at 5:43 pm
  • Discussion in Symptoms · 7 replies
  • I need advice PLEASE. I've been so sick for 2 yrs. & going down down down. I have every possible symptom of sarcoidosis. Never heard of it until UT neurologist suspected after ACE level off chart & calcified ...

Good evening all!

  • By irishree · New reply yesterday at 5:37 pm
  • Journal · 2 replies
  • HI...I've been reading some of your posts...haven't been in much of a mood to respond.I apologize. I am keeping you in my thoughts. I just feel BLAH! Besides trying to deal with all that's going on with ...


  • By jelzim · New reply yesterday at 4:11 pm
  • Discussion in Treatment decisions · 7 replies
  • My Doctor wants me to start using Acthar. has anyone been on this? We had to send for authorization so I'm not sure if it will be approved. Linda ...

Help design a clinical trial

  • By KimmiaFSR · New reply yesterday at 2:50 pm
  • Discussion in Treatment decisions · 5 replies
  • On behalf of Dr. Adam Morgenthau, a pulmonologist at the Icahn School of Medicine at Mount Sinai whose work focuses on the development of new treatments for sarcoidosis, FSR is asking for your assistance ...


  • By debs36 · New reply yesterday at 2:41 pm
  • Discussion in Living with sarcoidosis · 6 replies
  • Hi just been doing some painting and my chest is sore and lymph nodes,is this to do with painting,plus I was lifting a chair with my sis and once I was finished I was wezing.also I'm getting my flu jag ...

Ebola update

  • By IreneMarie · New reply yesterday at 11:01 am
  • Discussion in Emotional support · 18 replies · Photos
  • Today I learned something new. Ebola is an RNA repicator not a DNA replicator. This means that with each replication a tiny segment in the chain is mutated. To me this means as it spreads if a vaccine ...

Potential Neurosarcoidosis dx

  • By JenStarlet · New reply yesterday at 10:12 am
  • Discussion in Living with sarcoidosis · 2 replies
  • Hi all, I was hoping for some support as I've not really found much information on neurosarcoidosis on the Internet. Please bear with me whilst I give you my back story - it's quite in depth! I've been ...

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Help and information from FSR

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.