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All new and active discussions & journals
First time posting
- By AtlanticOcean · Posted 9:15 pm
- Journal · 0 replies
- I have been reading alot of the journals over the past two months and have learned so much from all you wonderful people. My story is not unlike many of you. I developed what I thought was just a cold ...
a grateful day
- By jon-with-no-h · New reply 8:52 pm
- Discussion in Emotional support · 12 replies
- To my fellow sarckies... Today I humble and gratefully celebrate four years of sobriety thanks to the simply program of AA. One day at a time. jon ...
Remicade
- By B-faithful · New reply 8:49 pm
- Discussion in Treatment decisions · 4 replies
- Hello everyone, my insurance approved to pay for the Remicade. Im suppose to start the treatment in a couple of weeks. Im a little concern about the side effects, but 4 of my doctors stated the side effects ...
Meetin up Locally after the holidays
- By TCALL · New reply 8:43 pm
- Discussion in Living with sarcoidosis · 8 replies
- A thought crossed my mind as well as others have had the same thought. It would be nice if there was a local meeting of some of us on this site to sorta have like a meet and greet! some where its permitting ...
Need your input, please
- By Tashabella · New reply 7:47 pm
- Discussion in Symptoms · 10 replies
- I have sarcoidosis in my lymph nodes so I know about this, but there's something I'm not sure about. I was wondering if any of you know the answer to this question. My friend's husband has undergone a ...
Best time to take Meds?
- By MurphyinVT · New reply 7:22 pm
- Journal · 7 replies
- I've had Sarc for 4-5 years. Biggest problem I have is with breathing difficulties and what I describe as feeling like having the flu all the time. Lack of energy and a general crappy feeling are the ...
Hello. My name is Moe, and I have sarcoidosis
- By MoeLung · New reply 7:05 pm
- Discussion in Living with sarcoidosis · 16 replies
- I'm new here and just joined. I was diagnosed this past July, after more than a year of dry cough and SOB (I love that acronym ... either 'sons of bitches' or 'shortness of breath'). During the year prior ...
Low Vitimin D
- By kassl · New reply 6:57 pm
- Discussion in Treatment decisions · 8 replies
- Soooo... I found out April 09 that I had pulm Sarc. I went through all the same stuff. GI,Oncology, Cardio Surgeon... In May I started on prednisone and Methotraxcate. I recently went to a pulm that specializes ...
Bone Sarcoid
- By janepauline · New reply 6:55 pm
- Discussion in Symptoms · 32 replies
- I think I may be developing sarcoid in my bones. My ankle is really painful and it feels as though it is in the distal bone end. Does anyone else have bone sarcoid? What are the symptoms and how were ...
Would anyone like to join me in a 9 day Novena to find a cure for Sarc?
- By IreneMarie · New reply 6:48 pm
- Discussion in Living with sarcoidosis · 17 replies
- A novena is a very short 9 day prayer (the lenght of time they waited in the Upper Room) for a special intention of ours for Mary our Heavenly Mother to bring in intercession before God, for us her earthly ...
Moody blues
- By TCALL · New reply 6:36 pm
- Journal · 4 replies
- Well its been a roller coaster for me in these last few months. Stress at my job, My home with my 16 year Daughter and I am so tired i can't do much. My lung capacity has decreased 3% and i'm still fighting ...
Vitamin D deficiency
GOOD NEWS BAD NEWS PULMONARY CHECK UP
- By Blkjewelz8960 · New reply 6:26 pm
- Journal · 13 replies
- Well had my 6 month Pulmonary check up. Visited the vampires and photographer first. Took pretty pictures of my scarred up lungs. They have automated the system now so no film to take with you. Did my ...
SO excited to share what I have found!
- By pwrsrg77 · New reply 5:53 pm
- Journal · 41 replies
- I have received TONS of wonderful support from this amazing community of people just like myself. All that struggle with debilitating symptoms, wrong diagnosis, less than quality doctors etc... I wish ...
diet soda/aspartame and sarc?
- By wannabecate · New reply 5:17 pm
- Discussion in Triggers · 9 replies
- hi! i'm new to the board and i have a question about my husband. he was diagnosed with sarcoidosis about 14 months ago, and like everyone has his ups and downs. one thing that i was wondering is if anyone ...
Erythema Nodosom cures
- By Giggles0318 · New reply 4:53 pm
- Discussion in Treatment decisions · 7 replies
- I first got Erythema Nodosom on my legs in 9/2008, along with granulomas in my lungs, coughing so bad I thought I'd choke to death. My asthma worsened, and I was tired a lot... I was prescribed prednisone ...
Just started on imuran (azothiaprine)
- By janepauline · New reply 4:45 pm
- Discussion in Emotional support · 27 replies
- I am feeling really down today. I have been on my new tablet for 7 days now and I feel sick and tired. It is not as bad as the methotrexate, no where near. But I was hoping I would feel better not worse ...
Anyone ever go into remission a 2nd time???
- By teeteeme · New reply 4:44 pm
- Discussion in Living with sarcoidosis · 19 replies
- What I don't get, is that when someone has "cancer" its a horse of a differnet color! Then they can come out and talk about it, everyone wants to listen.There is no new info, what do they want to hear ...
Sarcoidosis - chicken or egg?
- By pheonixtoo · New reply 4:35 pm
- Journal · 23 replies
- I've had sarcoidosis for many years and mercifully not as badly as many of you that I have read about. I have found something that has worked for me (I am still improving) and am desperate to see if it ...
Good News! Approval for Remicade..Finally
- By Minneyshoes · New reply 3:58 pm
- Discussion in Treatment decisions · 9 replies
- Last year I was turned down for Remicade by Medicare and some assistance programs. This year I was looking on line and found Janssen Ortho Patient Assistance Foundation and I applied and was approved ...
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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.