Stop Sarcoidosis Support Community

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

Join today

All new and active discussions & journals

Need the name of a Sarc specialist in the Seattle area

By lillideita · Posted 11:55 am
Discussion in Help desk · 0 replies
I was diagnosed with sarc 3 years ago,am under the care of a rheumatologist. But would like to consult with a Sarcoidosis specialist in the Seattle,WA, area. Anyone who can help? Lillideita ...

uveitis - the sequel

By shelam · New reply 11:32 am
Discussion in Symptoms · 5 replies
Well, as promised, I am here to tell you of my adventure at the acute optic clinic; DO NOT read if you are of a nervous disposition!! As I told in my last little epistle, I attended the neurophthalmic ...

My testimony Candidiasis Albicans could be contributing to your symptoms to

By Shae44 · New reply 11:23 am
Discussion in Treatment decisions · 12 replies
I have a testimony!!!!!!!!!!!!! God has straight-up answered my prayers regarding my health and it is so amazing to know that above all, he LOVES me enough!!! My prayers came to fruition in one of the ...

Life Changes in a MOMENT!

By CAROLDEE · New reply 11:23 am
Journal · 7 replies
Good morning all. It is a fine beautifull day in South Africa. The sun is shinning and we are having a lovely warm winters day, But, there is pain in our hearts today. Yesterday, sitting at my desk, trying ...

heart sarcoid?

By ldybusdrvr · Posted 11:16 am
Journal · 0 replies
Actually embarrassed to put a post on here ,haven't been on in sooooo long,I had appt. yesterday and told Dr. about chest pain and they kind of ruled out heart although last few xrays have shown enlargement ...

IVIG

By madison12 · New reply 11:10 am
Discussion in Treatment decisions · 2 replies
Has anyone had an IVIG treatment? I had my first one last week. Very fatigued. Would love to hear other experiences and side-effects. Thank you ...

Presidone plus NIH Study

By z11 · New reply 10:26 am
Discussion in Living with sarcoidosis · 25 replies
Just some stuff i had found and saved in the past from med papers/research etc. Makes eye opening reading for us imo; "NIH ACCESS study shows that Sarcoidosis does not go away This NIH study (published ...

Just had a VATS biopsy

By O2 · Posted 9:08 am
Discussion in Treatment decisions · 0 replies
Hi folks, Went through with the VATS wedge resection Lung thoracoscopy on Monday for "Diffuse Disease & Hillar Node Biopsy". The operation went well and they removed a nodule from my right lung as well ...

I must not be as tough as some of you....

By melle · New reply 8:32 am
Discussion in Treatment decisions · 7 replies
I had my mediastinoscopy Wednesday afternoon. (I get my results Tuesday-ish so we're on pins and needles.) I read the discussions where you all said you'd had it done, it was no big deal, you were back ...

Sarc Docs in the Triangle NC area?

By TheNativeGoddess · New reply 8:27 am
Discussion in Treatment decisions · 5 replies
Hi everyone, Long story - short, I'm in need of a Sarc Doc in the Raleigh/Durham/Chapel Hill NC area. Anyone out there who can recommend a good Doc? By good Doc, I mean a Sarc Doc who is extremely thorough ...

Fatigue during "remission"

By grpearson2010 · New reply 7:21 am
Discussion in Symptoms · 11 replies
Hi Sarc family, I have been blessed to be in "remission" for the last 1-1/2 years. We all know what that means. For the last 6 months, I have spent more time in the bed from fatigue than I did went my ...

Prednisone & Methotrexate

By tazzytaz · New reply 7:10 am
Discussion in Treatment decisions · 5 replies
Hello all, I was recently diagnosed with sarcoidosis last month. It is on my T-10 bone and currently been found in my lacrinal sac( tear ducts). I have been taking Presnisone 20 mg for the past month ...

Rheumatologist

By tazzytaz · New reply 6:56 am
Discussion in Living with sarcoidosis · 6 replies
Hello all, I was recently diagnosed with sarcoidosis last month. It is on my T-10 bone and currently been found in my lacrinal sac( tear ducts). I have been taking Presnisone 20 mg for the past month ...

Group support

By tazzytaz · New reply 6:38 am
Discussion in Emotional support · 5 replies
Hello all, I was recently diagnosed with sarcoidosis last month. It is on my T-10 bone and currently been found in my lacrinal sac( tear ducts). I was looking for any type of groups or meeting that might ...

DO NOT use Topical Steroids on your face!!!

By kmcharb24 · New reply 6:33 am
Discussion in Treatment decisions · 3 replies
I understand how painful it can be to have Cutaneous Sarcoidosis. My face was being distorted by the Sarcoid-my nose/nostril was ridiculously large...it hurt and it was mortifying! Cutaneous Sarcoidosis ...

MTX ACE and Pred

By LittleEcho · New reply 3:47 am
Discussion in Treatment decisions · 6 replies
For four full months I have been taking the methotrexate injections with no positive results. A few months ago I weaned myself off the prednisone to see if I felt better and I felt much worse, so I started ...

Help, Just Lost Perscripition Coverage

By ColleenPD · New reply 2:24 am
Discussion in Treatment decisions · 6 replies
Hi everyone, I was wondering if anyone has any suggestions for me... My family just lost our perscription drug coverage. I don't know how I will afford our meds now! My husband and I are not seniors ...

Pregnancy, Estrogen, and Women

By IreneMarie · New reply 2:20 am
Journal · 5 replies
Pregnancy, Q: Should I have a baby after 35? A: No, 35 children is enough. Q : I'm two months pregnant now. When will my baby move? A: With any luck, right after he finishes college. Q : What is the most ...

Burning feet

By dolphinstoo · New reply 1:54 am
Discussion in Symptoms · 1 reply
Good morning all! You know it is 100 degrees in St. Louis most days now, but my feet are still at 110 degrees. My husband laughs and says when he married me some 20 years ago, I always had cold feet ...

Sarcoidosis Research @Vanderbilt University

By JanL51 · New reply 1:17 am
Discussion in Treatment decisions · 21 replies
I just visited Dr. Wonder Drake at Vanderbilt yesterday. I was diagnosed w/sarc in 2000. Struggled with it for probably 2 years before diagnosis and 3 years after. I chose to do all alternatives. I went ...

Sign in to see more

Inspire others

Together we're better - Stop Sarcoidosis Support Community

Support your group with badges for your e-mail, website, blog, and more ...

Help and information from FSR

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.

Group leaders

Discussion topics

You

About this group

The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration. The Stop Sarcoidosis Support Community is sponsored by the Foundation for Sarcoidosis Research in partnership with Inspire.