Sarcoidosis

Hello, My names Lori and I was diagnosised with sarcoidosis at the age of 35, im now 42. My mother also has sarcoidosis and although they say its not something that can be passed from parent to child, it has with my mom and I. She also was diagnosed when she was 35. My mom had sarcoid so bad that there were days when she couldn't walk. She had it in her liver, spleen, nerve endings, muscles, eyes and a little bit in her lungs. I however, have it in my liver, spleen, eyes and lungs. My eyes are fine now but I still have it in my liver, spleen and I have it really bad in my lungs. My pulmonary specialist put me on methatrexate but my liver enzymes sky rocketed and I had to stop taking it. So once again im back on the prednisone. Has anyone taken anything else thats helpe.d them? Im so sick of being sick, of sitting back and watching my family having fun but not being able to participate. Its so depressing. I can't even laugh with my children without coughing and choking and becoming short of breath. Im forever sick with a cold or pnemonia and sometimes it just gets to me. I've seen what my moms went through and although I don't have the pain that she has had, I just can't breathe. My mother and I have the same doctor and she is also on methatrexate but she is doing excellent the pain is gone, her diabetes is gone, she still has a little fluid in her lungs and has to have blood test often and chest xrays but she is in total remission. Im so happy for her because she has been through so much in her life with this disease. Can anyone give me some ideas of different drugs that they've taken? Or what has helped you get more air? I know I should be thankful it could be worse, but im missing out on so much. I wish you all the best of luck and hope that they find a cure for this illness.

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I started Dr. Drake's trial at Vanderbilt but was unable to finish it. But, it seemed to really help my lungs. They are almost normal now. My pulmonologist says I really don't need her but to just watch them now. You can look at my past journals and see the protocal. It was all antibiotics. Rarity on this site got his doctor to do the same protocol and he says his lungs are good now.

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Remicade has helped me however it is not approved by the FDA for sarc . It's sn arthritis drug . It's very hard to get your INS co to approve it . It took away all my pain and cleared my eye sarc . I have not had it for 3 months now and my eyes r very bad again .
I don't know about. Your mom passing it to u or not . My dr told me since I had it there is a good chance that someone else in my family has it . They said I could have had it all my life and at 61 it decided to rear it's ugly head and almost kill me . . Wishing u and your mom luck . God bless and there r a lot of nice people on here to help u . If only to come on and vent . Try to get your mom on here too . It will be good for her .

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The NOD2 and CARD15 genes are associated with familial sarcoidosis also known as BLAU Syndrome.
a simple blood test can be performed to determine if this is what is causing your symptoms to include uveitis which you mention.
uveitis associated with this form of sarcoidosis can quickly lead to vision loss. Multifocal Choroiditis and pan uveitis is seen along with BLAU syndome. I know two sisters in British columbia canada with this very rare form of sarcoidosis who only resonded to the drug Remicade before their eye involvement finally quited down. one is legally blind now.
I strongly urge you to get an Ocular Immunologist involved in your care. there are lists at http://www.uveitis.org in the patient information section of the site that you can look through to find one of these experts in treating uveitis and underlying autoimmune diseases employing combinations of drugs in a corticosteroid sparing approach to treatment.

Wishing you the very best,
Mike Bartolatz

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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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