Treatment decisions

Treatments are intended to improve how the organs affected by sarcoidosis work and to relieve symptoms. Some organs must be treated, regardless of your symptoms while others may not need to be treated. Discuss your current treatment program and ways your condition is monitored.

Discussions

Meloxicam

chaplainstevens
  • By chaplainstevens · New reply 2:29 am
  • 8 replies
  • I was given Meloxicam for my joint pain, it has sat on my dresser for almost 6 months, well I broke down this morning and took one...hope they work. I had pretty much given up on most medications for ...

can you eat edibles of marijuana instead of vic and oxy for pain.

Achiever
  • By Achiever · New reply yesterday at 9:45 am
  • 13 replies
  • tired of taking narcs for pain all the time they make me sick to my stomach. I'm already on metheroxate my goodness. don't want to smoke it. but if eating it can relax me why not tired of medications ...

Sarcoidosis in kidney

McGinley
  • By McGinley · New reply yesterday at 1:07 am
  • 2 replies
  • Howdy all, Two years ago I was diagnosed as having sarcoidosis in my kidneys. A very aggressive prednisone treatment knocked back the sarcoidosis and restore some (but not all) of my lost kidney function ...

Again

whistle4forme
  • By whistle4forme · New reply May 19, 2013
  • 4 replies
  • Looks like I am in a flare. Do you always have to take pred with methotrexate or plaquenil or what ever they choose ...

Questions to ask Doctor

kathyjo924
  • By kathyjo924 · New reply May 17, 2013
  • 8 replies
  • Hello, I'm going to see a specialist on sarcoidosis in Chicago on Friday, What questions should I ask her? Kathy ...

Pulmonary and Neurosarcoidosis

1Sadaf
  • By 1Sadaf · New reply May 17, 2013
  • 10 replies
  • I am in Seattle, and am looking for specialists for both Pulmonary and Neurosarcoidosis. I am willing to travel out of the state as well ...

Does Humira help?

graciej
  • By graciej · New reply May 15, 2013
  • 11 replies
  • I have been denied Humirs once. Next week I have a Upper GI scope and a colonoscopy done, and I hope to find evidence of sarc. With that I'm hoping to have the ability to reapply to Humira. I've a 10 ...

chest pains,heart palpitation with pain,difficulty breathing

hempbwoi
  • By hempbwoi · New reply May 15, 2013
  • 3 replies
  • Hello there..I'm a new membr here nd I wud rily lyk ur advises..I'm suffering from non stop chest pains(regular cracks)been lyk ths fo a few years(3years)..now thy seem 2 be geting worse..I get th constant ...

PREDNISONE&METHOTROXATE

TOYS1280
  • By TOYS1280 · New reply May 14, 2013
  • 16 replies
  • Hi Guys, I was wondering has anyone taken a combination of prednisone and methotroxate at the same time? I have alot of inflammation going on in my left eye to the point it is very blury. I made an appointment ...

Thank You FSR, SSSC

drbob2020
  • By drbob2020 · New reply May 13, 2013
  • 10 replies
  • I am a physician who has found this Stop Sarcoidosis Support Community (SSSC) very helpful! About 6 months ago I became very active in a 71 year old friend's care. He had multiple symptoms over the 3 ...

Keterolac

AlphaLover
  • By AlphaLover · Posted May 12, 2013
  • 0 replies
  • Have any of you with sarcoid uveitis been pit on keterolac once the uveitis was controlled? If you have one cell seen, is it considered controlled? Maybe Mike B can reply ...

Has anyone been diagnosed with Susacs syndrome?

Rpsfarms
  • By Rpsfarms · New reply May 12, 2013
  • 2 replies
  • I was diagnosed with Susacs Syndrome in early March of this year. Started 1,000 mg Prednisone IV for 5 days and now on 60 mg of prednisone pills. Side affects of prednisone seem worse than disease. Does ...

If we can find out the cause & find a cure

ashleytc
  • By ashleytc · New reply May 12, 2013
  • 6 replies
  • Wouldn't it be wonderful to find out the cause of sarcoidosis? I can't wait for that day ...but it will be a blessing to find a cure ...I wish I can be a genius sometimes ...

Fed Up With It All !!!!

bonnie6789
  • By bonnie6789 · New reply May 11, 2013
  • 5 replies
  • Hello Everyone: It has been quite sometime since I've visited this support group. I was diagnosed in 09 at the age of 53 with pulmonary sarc. and other issues sarc related. I left my job as a result ...

granulomas

gatcha
  • By gatcha · New reply May 10, 2013
  • 19 replies
  • can someone help me if you know some medications to removed my lung scar ...

Connecting patients to research is a priority for FSR.

FSREXECDIR
  • By FSREXECDIR · New reply May 10, 2013
  • 10 replies
  • FSR has developed The Clinical Trial Interest Indicator (CTII), a basic “contact list” system designed to connect patients with clinical trials. Its purpose is to build a list of patients who would be ...

Acthar

fire772
  • By fire772 · New reply May 10, 2013
  • 2 replies
  • Hello everyone Has anyone had any experience with using acthar for the treatment of pulmonary sarcoid? I have had sarcoid for almost 12 years and have never been able to lower the prednisone dose below ...

Here we go again!!!

cheri72
  • By cheri72 · New reply May 10, 2013
  • 5 replies
  • Its been a long time since I have visited this site, I have been off my meds for almost two years now, doing really well. It sure did not last long enough! Doctor says I must go back on Methotrexate and ...

Baughman - New Primary Dr.

MommaWesty
  • By MommaWesty · New reply May 9, 2013
  • 1 reply
  • Went to my second visit with Dr. Baughman. Gonna stay the course and give it another six weeks with the Plaquenil. He was glad I switched my dose to nightly. Said it was good I researched it and changed ...

how long should it take to come off steroids

gingbugs
  • By gingbugs · New reply May 9, 2013
  • 10 replies
  • I have just come back from the hospital and have been told that it will take a month to come off the steroids I thought it took a lot longer than that so i'm a bit worried ...

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Discussion topics

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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