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no more steroids
- By Soosie · Posted 1:38 am
- Journal · 0 replies
- As from 30 June my steroids stopped. I have been reducing them over the last few months and feel great! if I am still well in about 6-weeks - without the steroids help - then my doc says I will be in ...
Providing emotional support for a loved one with Sarcoidosis
- By Jrs_Mom · New reply yesterday at 11:20 pm
- Discussion in Emotional support · 23 replies
- Many of you have probably already heard my story. My 25 year old son, my only child, was diagnosed with Sarcs in February 09. He continues to get worse and is now on Prednisone but he is in a lot of pain ...
PAIN: Can you describe it?
- By carosu · New reply yesterday at 10:52 pm
- Journal · 10 replies
- Yesterday my doctors decided to lower my pred to 20 mg. Last evening I was sitting in my chair and a headache hit... suddenly... along with a stomach ache that bent me over. I took an Ambien and went ...
Do healthy people have the sense God gave fleas.
- By rarity · New reply yesterday at 10:50 pm
- Journal · 9 replies
- I was in the bar again tonight or is it last night or is this morning part of last night or a separate entity I am such a snarf. (writer who has one hand so far up his nose he is scratching his hemmorhoids ...
Lung Pain
- By donnakay7704 · Posted yesterday at 10:25 pm
- Discussion in Living with sarcoidosis · 0 replies
- What can be done besides low dose prednisone to help with the inflammation? I was diagnosed in 1995 and at that time I was told that prednisone was the only option, but my condition was not bad and didn't ...
Good and Bad News
- By Jolene2 · New reply yesterday at 9:13 pm
- Journal · 3 replies
- Well Today I saw my Pulmonologist and I received the results of my Breathing test and my new CT scan. My breathing came in good, which I am amazed at. I told her she made me really sit there forever until ...
Heart Valves/Pulmonary Hypertension
Smoking suppresses Sarcoidosis
- By Bat · New reply yesterday at 8:52 pm
- Discussion in Treatment decisions · 21 replies
- Smoking supresses Sarcoidosis, does anyone know if this is true. My symptoms disappeared when I returned to smoking, now I have given up again the symptoms seemed to have come back ...
Dry mouth and too much saliva
Sarcoid/MS?????
Going to the Dr with my son soon - any advice on questions to ask?
- By Jrs_Mom · New reply yesterday at 7:04 pm
- Discussion in Treatment decisions · 2 replies
- I will be going to the dr. with my son (who has Sarcs) in just a few weeks. It sounds like his dr. isn't all that experienced with Sarcs and from everything I read on this site there is so much I want ...
ACE Level at 161
- By carol101 · New reply yesterday at 6:53 pm
- Discussion in Treatment decisions · 13 replies
- Received the results of my latest blood test but no one has told me what to do just noted that it is very high at 161. Prior to the latest results the GP wants me on prednisolone for life and the lung ...
Happy Fourth of July
- By jeanie33 · New reply yesterday at 6:49 pm
- Journal · 19 replies
- There was a time -- I absolutely loved this time of year, we would body surf, make sand castles then watch the fireworks. All and all a perfect day. These days I avoid the sun, as a result I am no longer ...
Am I Lucky?
Want to get control of your life again??? Get a BINDER!
- By Shae44 · New reply yesterday at 3:35 pm
- Discussion in Living with sarcoidosis · 5 replies
- Good morning family!!! I mentioned the other day that I took all my labs and doctors notes and organized them and made some charts to bring my situation up to date and BOY DID IT MAKE A DIFFERENCE OVER ...
Joke of the Day
- By Lizi · New reply yesterday at 3:28 pm
- Journal · 7 replies
- My son made this one up -- I wonder how it came into his mind? Question: What's worse than a wife in the Twilight Zone? Answer: A mom in the predni-zone. Made me laugh -- it's so true. Lizi ...
Brighter Day!!!!!!
Master Cleanse?
- By newmama1 · New reply yesterday at 1:34 pm
- Discussion in Treatment decisions · 4 replies
- Hi, I was wondering if anyone has tried the master cleanse diet with sarcoid. and if so were you on any meds at the time, and did it help? I am considering the master cleanse, but I am on 10 mg prednisone ...
Knock on wood...I feel near normal
- By Kimlou · New reply yesterday at 12:50 pm
- Journal · 9 replies
- I've been on 5mg pred for a week now. Next week I'll be prednisone-free for the first time in more than 6 months. Weaning down hasn't been easy, but I have felt the most normal this past week (on 5mg/day ...
Back and rib cage pain
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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.