Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 My son (who is adopted -- making all this even harder to get to the bottom of) ---- has been found to be HLA-B27 positive. We know this makes him susceptible to some auto- immune issues. Dos anyone know if there is a higher rate of HLA-B27 amongst sarcoidosis sufferers? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 My son (who is adopted -- making all this even harder to get to the bottom of) ---- has been found to be HLA-B27 positive. We know this makes him susceptible to some auto- immune issues. Dos anyone know if there is a higher rate of HLA-B27 amongst sarcoidosis sufferers? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 , When I was first diagnosed with uveitis many years ago, they checked me for hla-b27. I believe it's a chromosome problem. I was negative, but they told me that it could be the cause of my eye problems. I'm sure there's more info on the web. Bonnie BWondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 , When I was first diagnosed with uveitis many years ago, they checked me for hla-b27. I believe it's a chromosome problem. I was negative, but they told me that it could be the cause of my eye problems. I'm sure there's more info on the web. Bonnie BWondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2008 Report Share Posted May 11, 2008 , Sarcoidosis is not a disease that goes along with HLA-B27 but ankylosing spondylitis and psoriatic arthritis are. It is found in about 50% of those with iritis. I am + for HLA-B27. I meet the diagnostic criteria for ankylosing spondylitis but don't have a definite diagnosis of it. HLA-B27 is a gene and so if it is + once it will always be positive. Ankylosing Spondylitis is a disease characterized by arthritis of the spine and sometimes uveitis. It is treated by Methotrexate and Enbrel. Enbrel is not given to patients who also have sarc according to my Rheum. Jane HLA-B27 ?? My son (who is adopted -- making all this even harder to get to the bottom of) ---- has been found to be HLA-B27 positive. We know this makes him susceptible to some auto-immune issues. Dos anyone know if there is a higher rate of HLA-B27 amongst sarcoidosis sufferers? ________________________________________ PeoplePC Online A better way to Internet http://www.peoplepc.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2008 Report Share Posted May 11, 2008 Jane, I am not up on the HLA-B27 but sarcoidosis is treated with Enbrel. It's just not yet FDA approved for sarc. We have several members on Enbrel, as well as Humira and Remicade and Cellcept. There's also another new Biological that they are using off-label. So let your Rheumi know so he's up on Enbrel as a possible solution for his sarcoidians. Thanks, Tracie NS Co-owner/moderator HLA-B27 ?? My son (who is adopted -- making all this even harder to get to the bottom of) ---- has been found to be HLA-B27 positive. We know this makes him susceptible to some auto-immune issues. Dos anyone know if there is a higher rate of HLA-B27 amongst sarcoidosis sufferers? ________________________________________ PeoplePC Online A better way to Internet http://www.peoplepc.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2008 Report Share Posted May 12, 2008 Tracie, The Rheum was talking to me about taking Enbrel for spondylitis. 4 years ago after finding out I could get Enbrel free from their foundation she told me I couldn't take it because of my lupus. She said Enbrel is contraindicated with Tb or Valley Fever. I tested negative for both of them. She still insists I have Valley Fever or cocci. I told her I had a granulomatous disease per chest xray and she said it must be Valley Fever because I currently live in Az. The chest xray says old granulomatous disease with cacified lymph nodes in the hilar area. It take 20-25 years for lymph nodes to calcify meaning i probably contracted sarc or histoplasmosis in Indiana where I grew up. She also has me down as having fibromyalgia and my pain is not widespread but all in my spine. So I have a diagnosis of lupus and fibromyalgia and what I probably really have is Sarc and spondylitis. One of these days it may get straightened out. Jane Re: HLA-B27 ?? Jane, I am not up on the HLA-B27 but sarcoidosis is treated with Enbrel. It's just not yet FDA approved for sarc. We have several members on Enbrel, as well as Humira and Remicade and Cellcept. There's also another new Biological that they are using off-label. So let your Rheumi know so he's up on Enbrel as a possible solution for his sarcoidians. Thanks, Tracie NS Co-owner/moderator HLA-B27 ?? My son (who is adopted -- making all this even harder to get to the bottom of) ---- has been found to be HLA-B27 positive. We know this makes him susceptible to some auto-immune issues. Dos anyone know if there is a higher rate of HLA-B27 amongst sarcoidosis sufferers?________________________________________ PeoplePC Online A better way to Internet http://www.peoplepc.com ________________________________________ PeoplePC Online A better way to Internet http://www.peoplepc.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2008 Report Share Posted May 12, 2008 Jane, Have you seen a pulmonologist and have they ever done a bronchoscopy to biopsy those lung granulomas? That would give them a better idea of exactly what is going on. Have they treated you with anti-fungals for lung infections? I know with Lupus that they would have to be prudent with the Biologicals--Enbrel, Humira, Remicade. I love how your MD automatically says- you live in Az, therefore it has to be Valley Fever. It's this deadhead type of thinking that makes getting set up with a treatment that would help you end up being put off for so much longer than it should. Since they don't yet know what causes sarcoidosis, and they lean towards it being a "genetic" predisposition to auto-immune disease (Lupus, Diabetes, Arthritis, MS, sarcoidosis and others) as well as an enviromental factor (agricultural dust, pesticides, Twin Towers fire and soldiers in the MidEast) as well as some "rouge" bacterial infection that seems to have turned on our immune systems- and now our immune system won't shut off the TNF-a, b process (FSR--www.stopsarcoidosis.org and www.sarcoidosissharma.com) have alot of this info as well as articles in our ARCHIVES and LINKS. So I guess my thought is did we contract sarcoidosis or is it the result (granulomas) as a build up of these proteins that are supposed to have cleared out the white cell process once it's done it's job. I do know we can't give it to someone else, so it is not a disease that "caught." I've not read that it takes 20+ years for lymphs to calcify-- do you have an article that you've read? I'd be interested, as it would maybe at least put another piece of the puzzle together. Guess I'll have to read up on the HLA-B27. Maybe it's linked to that. Lupus is nasty, fortunately though, they are beginning to have some treatments that are doing some good, much like with MS. More funding is going that way at least. Ank.Spond. is also so very painful. I know that for many it destroys the cartlidge triangle at the base of the spinal column, and eventually can lead to paraylsis. My heart goes out to you-- this is a huge challenge. Take care, Tracie NS Co-owner/moderator HLA-B27 ?? My son (who is adopted -- making all this even harder to get to the bottom of) ---- has been found to be HLA-B27 positive. We know this makes him susceptible to some auto-immune issues. Dos anyone know if there is a higher rate of HLA-B27 amongst sarcoidosis sufferers?____________ _________ _________ _________ _ PeoplePC Online A better way to Internet http://www.peoplepc .com ________________________________________ PeoplePC Online A better way to Internet http://www.peoplepc.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2008 Report Share Posted May 13, 2008 Tracie, Thanks for your response. I never thought I had sarc or histoplasmosis or any other similar disease until 4-5 years ago when I had a chest xray for shortness of breath and it was interpreted as an old granulomatous disease. I did read an article on the calcifications taking 20 some years but I didn't save it.I did test negative for Valley Fever. The Rheum said it didn't matter. Histoplasmosis is rampant in Indiana. So that is a possiblity. I recently developed a parotid lump and I figured it was either Cat Scratch Fever or sarc from research. I guess it is found in about 6% of sarc patients. It looks like it was Cat Scratch Fever. We used to have a cat rescue. I don't have the final culture results back. she didn't send the cells in for biopsy. There was a 20% chance it could have been a malignant tumor so I am happy about that. I had an eye Dr. and a disability Dr. tell me that they thought I had AS. now 2 Rheums have suggested treating me for AS but won't give me a diagnosis. My chest xray showed unilateral hilar involvement which is not typical for sarc. I have some nodules in my legs. I don't know if they could be biopsied. I don't have some of the classic lupus symptoms like kidney involvement, butterfly rash, anti-DNA. Since I only seem to qualify for pred and MTX and tolerate both I guess the thought of a lung biopsy just to prove what I do or do not have isn't something I want to do. In the meantime tis listserv helps me because I share so many symptoms. Excuse any typos we have a partially obscured screen and a new ISP that I am still trying to figure out. Jane Re: HLA-B27 ?? Jane, Have you seen a pulmonologist and have they ever done a bronchoscopy to biopsy those lung granulomas? That would give them a better idea of exactly what is going on. Have they treated you with anti-fungals for lung infections? I know with Lupus that they would have to be prudent with the Biologicals--Enbrel, Humira, Remicade. I love how your MD automatically says- you live in Az, therefore it has to be Valley Fever. It's this deadhead type of thinking that makes getting set up with a treatment that would help you end up being put off for so much longer than it should. Since they don't yet know what causes sarcoidosis, and they lean towards it being a "genetic" predisposition to auto-immune disease (Lupus, Diabetes, Arthritis, MS, sarcoidosis and others) as well as an enviromental factor (agricultural dust, pesticides, Twin Towers fire and soldiers in the MidEast) as well as some "rouge" bacterial infection that seems to have turned on our immune systems- and now our immune system won't shut off the TNF-a, b process (FSR--www.stopsarcoidosis.org and www.sarcoidosissharma.com) have alot of this info as well as articles in our ARCHIVES and LINKS. So I guess my thought is did we contract sarcoidosis or is it the result (granulomas) as a build up of these proteins that are supposed to have cleared out the white cell process once it's done it's job. I do know we can't give it to someone else, so it is not a disease that "caught." I've not read that it takes 20+ years for lymphs to calcify-- do you have an article that you've read? I'd be interested, as it would maybe at least put another piece of the puzzle together. Guess I'll have to read up on the HLA-B27. Maybe it's linked to that. Lupus is nasty, fortunately though, they are beginning to have some treatments that are doing some good, much like with MS. More funding is going that way at least. Ank.Spond. is also so very painful. I know that for many it destroys the cartlidge triangle at the base of the spinal column, and eventually can lead to paraylsis. My heart goes out to you-- this is a huge challenge. Take care, Tracie NS Co-owner/moderator HLA-B27 ?? My son (who is adopted -- making all this even harder to get to the bottom of) ---- has been found to be HLA-B27 positive. We know this makes him susceptible to some auto-immune issues. Dos anyone know if there is a higher rate of HLA-B27 amongst sarcoidosis sufferers?____________ _________ _________ _________ _ PeoplePC Online A better way to Internet http://www.peoplepc .com ________________________________________ PeoplePC Online A better way to Internet http://www.peoplepc.com ________________________________________ PeoplePC Online A better way to Internet http://www.peoplepc.com Quote Link to comment Share on other sites More sharing options...
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