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Weaning off of Prednisone
- By Margie74 · New reply 6:16 am
- Discussion in Living with sarcoidosis · 15 replies
- My doctor started me off with 20mg/day of Prednisone. My dose has just been dropped to 15mg to try to wean me off. I am amazed and disappointed that I can tell the difference between the 2 doses. Although ...
Mononucleosis
- By NDLindy · New reply 5:48 am
- Discussion in Living with sarcoidosis · 4 replies
- Has anyone heard of any links to Mononucleosis? I was in the hospital for 11 days at age 15 (I am now 59) and I missed 3 months of school. It was also a little known desease at that time. I have always ...
SUN
- By pebbles1962 · New reply 5:32 am
- Discussion in Help desk · 6 replies
- I am going on a cruise in march and have got to stay out of sun which in Caribbean is impossible. I take 20mg methatrexate will be wearing hat high factor cream etc but has anyone got any real advise ...
Sarocidosis and Hand Pain
Ganglion cysts and sarcoid
pain in top spine
- By pebbles1962 · New reply 3:55 am
- Journal · 2 replies
- I have over the last few days got sever pain in the big node thing at top of spine/neck normally it is large but it has gone flat. I hope it is not crumbling as my disk between 12/13 vertebrae has gone ...
Sarcoidosis
- By Ivvy · Posted 2:31 am
- Discussion in Living with sarcoidosis · 0 replies
- My mother has been diagnosed with sarcoidosis since 2007. It is in a pretty advanced stage. Eyes, kidneys are for sure affected. Now she can hardly walk due to severe knee pain. She is on a low dose steroid ...
Bumping this up for new members who to get Sarc data organized
- By IreneMarie · New reply 2:20 am
- Discussion in Living with sarcoidosis · 83 replies
- Hi fellow Sarcies, Just thought I would bump this up for those interested in getting their info organized..... easy Excel print outs to get started, give direction to and get more out of your health care ...
outter ear pain in both ears
- By Shannigans · New reply 1:20 am
- Discussion in Symptoms · 4 replies
- Iam back again. And wondering what on earth is going on here. Yesterday evening I had a sore spot on the outside of my right ear. The pain is gone but it seems to have left my cartledge or small bone ...
Doing much better the Natual Way!!!!!!
- By jeffmut · New reply 1:19 am
- Journal · 42 replies
- Hi Everybody, It all started in Oct 2001 when I applied for more life insurance(being new to the business and having a 5 year old daughter I thought it was a good idea, no health issues that I knew of ...
HELLO ! EVERYONE I LOVE YOU ALL!!!!! P.S. BLKJEWELLS 69
- By sonnyelectric · Posted 1:05 am
- Journal · 0 replies
- SONNYELECTRIC HI!! I MISS YOU ALL, BEEN BUSY LISTENING TO RADIO STATION AM AL. SHAPTON 1380 STREAM............AND ART BELL`S PLANET X TRASH !!! MY SARCOIDOSIS JUST HANGING RIGHT ON ...
Sarc/environmental study in 1995??
If I am Tired It Must Be Sarc
- By rarity · New reply 12:45 am
- Journal · 23 replies
- I really lead a boring existence but then I have sarc so what am I supposed to do with my life. I wake up sometimes during my day and try and force myself to come to terms with as high a level of consciousness ...
Need Rheumatologist in Chicicago area
- By SherryJK · New reply yesterday at 11:48 pm
- Discussion in Treatment decisions · 9 replies
- Does anyone have a recommendation for a Rheumatologist in the Chicago area who KNOWS Sarcoidosis? Thanks ...
Who as been shocked by their ICD?
- By mvaughn1018 · New reply yesterday at 11:05 pm
- Discussion in Treatment decisions · 4 replies
- I just came back from the e.p. cardiologist. They can't decide what to do with me. They know I'm having ventrical arrithymas. They can't determine if I have cardiac sarc. They are concerned and want to ...
Are you BACKWARDS?
- By mvaughn1018 · New reply yesterday at 10:58 pm
- Discussion in Emotional support · 8 replies
- Good news, the event monitor results are in. They found something. Despite my family and friends' opinion, I do have a heart. It was captured on the event monitor. Well, it was captured beating backwards ...
Has anyone had sarcoid in all their large bones?
- By TammieJane · Posted yesterday at 10:06 pm
- Journal · 0 replies
- I have just been diagnosed with sarcoid in all my large bones and also spine as well as lungs spleen etc.? Have had pain for appx a year. They put me on 40 mg prednisone. Some pain is gone but not all ...
Accidental Activism?
- By cinnamonspirit · New reply yesterday at 9:50 pm
- Discussion in Living with sarcoidosis · 3 replies
- I think one of my brothers and I may have educated Representative Ciro Rodriguez this past Saturday without even meaning to. We live in San Antonio, Texas. Rep. Rodriguez holds fairly regular open houses ...
Night Sweats
- By Margie74 · New reply yesterday at 9:34 pm
- Discussion in Living with sarcoidosis · 7 replies
- I know that this topic had been covered many times over but do night sweats ever go away? Is having night sweats a permanent part of having Sarcoid or does it only show during flares? I have severe night ...
Offering templates to compile Pt Med INfo from caregiver perspective
- By Eosboriken · New reply yesterday at 9:27 pm
- Discussion in Help desk · 12 replies
- After being taking care of my husband for the last 3 years, and having "wonderful" experiences with the healthcare system, I have decided to create a series of templates which can help to compile all ...
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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.
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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.