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

MORE VIT D... Research concludes D supplementation is safe in sarcoid

Zapples
  • By Zapples · New reply 12:46 am
  • Discussion in Treatment decisions · 8 replies
  • J Bone Miner Res. 2014 Apr 18. doi: 10.1002/jbmr.2262. [Epub ahead of print] Calcium and Vitamin D in Sarcoidosis: Is Supplementation Safe? Kamphuis LS1, Bonte-Mineur F, van Laar JA, van Hagen PM, van ...

My love / hate relationship with predisone

Casie78
  • By Casie78 · New reply 12:02 am
  • Journal · 4 replies
  • Still struggling. It's one day at a time. I start out feeling pretty good in the mornings, and as the day goes on I wind down like one of those wind up monkeys. I have started taking my meds a few hours ...

Eye question

michrona74
  • By michrona74 · Posted yesterday at 11:22 pm
  • Discussion in Living with sarcoidosis · 0 replies
  • I started having ocular migraines (or at least my PCP and I assume that is what they are based on my description) fairly recently. Never had them prior to the sarc diagnosis though I did have a double ...

Sarc in Pericardium: Pericardial effusion and pericarditis

DoreenC
  • By DoreenC · New reply yesterday at 11:03 pm
  • Discussion in Living with sarcoidosis · 2 replies
  • Hi Everyone: I have been taking a hiatus from the board. In March I was diagnosed as now having the sarc in the sac around my heart (pericardium). I still have a tiny bit of fluid there. I have a long ...

Knee replacement and sarcoidosis

nanner
  • By nanner · New reply yesterday at 11:01 pm
  • Discussion in Treatment decisions · 2 replies
  • It's been a long time since I posted here. I was diagnosed back in 2007, when my lungs finally were involved, but believe the disease has been lurking since I was around 20. I confounded many a rheumatologist ...

sudden onset headache

debim
  • By debim · New reply yesterday at 9:56 pm
  • Discussion in Help desk · 4 replies
  • I experienced a sudden onset headache "the worst headache ever" a few nights ago. The headache came-on almost instantly and progressed in intensity for about a minute in the back of my head. I pressed ...

Chronic spontaneous urticaria and angioedema

dryzeabone2012
  • By dryzeabone2012 · New reply yesterday at 8:48 pm
  • Discussion in Triggers · 4 replies
  • Today I attended a hospital in Oxfordshire as I had been suffering with swellings of the lips and face and also hive like rashes on my body. This has been going on for about 4 months. I thought it was ...

blindness

Felicity17

Does "REMISSION in Sarcoidosis" Mean that EVERYTHING goes back to normal?

friend9
  • By friend9 · New reply yesterday at 8:12 pm
  • Discussion in Symptoms · 34 replies
  • NOTE: There is a request at the bottom of this post that I hope you will read all the way down to. Thanks! Here's the gnawing question I am being forced to struggle with: "Does 'TOTAL REMISSION' mean ...

Youngest case?

Ralphetta
  • By Ralphetta · New reply yesterday at 6:20 pm
  • Discussion in Living with sarcoidosis · 13 replies
  • I'm wondering if anyone knows what the youngest reported case of Sarcoidosis is. I was diagnosed around age 40 and my nephew was about 31. I haven't heard of any really young people with it, but would ...

Polymyalgia rheumatica

Brsparkles
  • By Brsparkles · New reply yesterday at 5:45 pm
  • Discussion in Living with sarcoidosis · 2 replies
  • Wanted to know if anyone has been diagnosed with PMR after a sarcoidosis diagnosis? Also, anyone with non Hodgkin's lymphoma prior to the above2? Life has many interesting challenges ...

Prednisone Humor----Enjoy :)

nicoleb21
  • By nicoleb21 · New reply yesterday at 5:29 pm
  • Discussion in Living with sarcoidosis · 8 replies
  • A little Monday Humor.........probably would be funnier if it wasn't true ...

Why D may not be so good for systemic sarc.

priscurl
  • By priscurl · New reply yesterday at 5:27 pm
  • Discussion in Treatment decisions · 39 replies
  • Hi people, You know I am mad. I found a fascinating paper and wanted to comprehend what it is saying regarding the effects of 1,25D in sarcoidosis. This is not just about hypercalcemia, this is about ...

Reach Out and Touch God (He's Waiting)

chaplainstevens
  • By chaplainstevens · New reply yesterday at 5:17 pm
  • Journal · 4 replies
  • Luke 8:46 "And Jesus said, Somebody hath touched me: for I perceive that virtue is gone out of me." This touch was not just an ordinary touch. This woman believed in her heart if she could touch even ...

Swollen abdomen

katyas
  • By katyas · New reply yesterday at 4:39 pm
  • Discussion in Symptoms · 3 replies
  • Has anyone noticed that their once flatter stomach has swollen and now they are looking overweight ...

cardiac involvement in Sarcoidosis: medscape article

uveitisguy
  • By uveitisguy · Posted yesterday at 4:11 pm
  • Discussion in Treatment decisions · 0 replies
  • http://www.medscape.com/viewarticle/4477 83_2 seems that post mortem evaluation indicates a high rate of undiagnosed cardiac involvement. mike ...

side effects of predisone and methotraxate

nanners74
  • By nanners74 · New reply yesterday at 4:10 pm
  • Discussion in Living with sarcoidosis · 2 replies
  • Does anyone experience a rollercoaster of energy levels. Some days I have a lot of energy and some with no energy. I have been on 60 mg of predisone daily and 7.5 mg of methotraxate once a week for about ...

Alcohol?

Casie78
  • By Casie78 · New reply yesterday at 3:31 pm
  • Discussion in Living with sarcoidosis · 3 replies
  • I'm not a heavy drinker by any means. An occasional glass of wine or beer is about it. I also (until recently) don't take a lot of meds so I've never had to worry about interactions with alcohol. This ...

Echo of the heart ~ borderline- ?

Pennings
  • By Pennings · New reply yesterday at 3:26 pm
  • Discussion in Living with sarcoidosis · 14 replies
  • Back in January (2014) I had an echo of my heart after the pulmonologist ordered it. The nurse called me after a week and told me it was borderline. She also told me that the doctor recommended I have ...

diabetic neuropathy & restless leg (sarc)

LonesomePeg
  • By LonesomePeg · New reply yesterday at 2:57 pm
  • Discussion in Treatment decisions · 10 replies
  • Hi Everyone, I have sarcoidosis but I also have diabetes. Today the foot doctors dx neuropathy in both feet. Besides prescribing special shoes, they have ordered the medicine, Neurotin. to be taken at ...

Log in to see more

Don't have an Inspire account? Sign up now!

Forgot password?

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

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.

Community leaders

Inspire others

About this community

The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Foundation for Sarcoidosis Research, an Inspire trusted partner.