Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 I was recently diagnosed with Avascular Necrosis (in my left hip) because of taking high doses of prednisone for several years. This is in addition to my pituitary and other gland problems also from the prednisone. Has anyone else had a problem with the necrosis, I don't recall seeing any mention of it. Thank you and I hope none of you ever have to deal with it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Claude, So far, they haven't put this name with the "bone pain" of my sarcoidosis. I too like most of us, have spent years on high doses of pred. My last ct of my lungs showed multiple fractions of my ribs-- and a "high amount" of calcifications of the costol-cartlidge throughout my ribcage. I know Quint has had to have his hips replaced, and I think we've got another couple of people that have serious problems because of the years on prednisone. I'm sure that Quint will try to answer you if he's able. I know he's in Florida at the moment-- so hopefully he is "plugged in." Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Hello: This is Bill in Denver....I have osseous sarcoidosis. The bone pain may be symptoms of the same disease....if it is....you need to contact Lee Newman MD. @ National Jewish Research Center.....Osseous Sarcoidosis is very rare.... The OS is throughout my entire skelatal system....mostly in the spine and in the ribs...hope this helpstiodaat@... wrote: Claude,So far, they haven't put this name with the "bone pain" of my sarcoidosis. I too like most of us, have spent years on high doses of pred. My last ct of my lungs showed multiple fractions of my ribs-- and a "high amount" of calcifications of the costol-cartlidge throughout my ribcage. I know Quint has had to have his hips replaced, and I think we've got another couple of people that have serious problems because of the years on prednisone.I'm sure that Quint will try to answer you if he's able. I know he's in Florida at the moment-- so hopefully he is "plugged in."Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Hello: This is Bill in Denver....I have osseous sarcoidosis. The bone pain may be symptoms of the same disease....if it is....you need to contact Lee Newman MD. @ National Jewish Research Center.....Osseous Sarcoidosis is very rare.... The OS is throughout my entire skelatal system....mostly in the spine and in the ribs...hope this helpstiodaat@... wrote: Claude,So far, they haven't put this name with the "bone pain" of my sarcoidosis. I too like most of us, have spent years on high doses of pred. My last ct of my lungs showed multiple fractions of my ribs-- and a "high amount" of calcifications of the costol-cartlidge throughout my ribcage. I know Quint has had to have his hips replaced, and I think we've got another couple of people that have serious problems because of the years on prednisone.I'm sure that Quint will try to answer you if he's able. I know he's in Florida at the moment-- so hopefully he is "plugged in."Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 You may be a candidate for Rituxin, a chem drug! That's what my hemotologist is trying on me, try going to a hemotologist versus a pulmonary doc, they seem to only use prednisone or methatrexate, which do little for bone involvement of Sarcoid, sarcoid has eaten my bones away in my hands and feet. > Claude, > > So far, they haven't put this name with the " bone pain " of my sarcoidosis. I too like most of us, have spent years on high doses of pred. My last ct of my lungs showed multiple fractions of my ribs-- and a " high amount " of calcifications of the costol-cartlidge throughout my ribcage. > > I know Quint has had to have his hips replaced, and I think we've got another couple of people that have serious problems because of the years on prednisone. > > I'm sure that Quint will try to answer you if he's able. I know he's in Florida at the moment-- so hopefully he is " plugged in. " > > Tracie > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 You may be a candidate for Rituxin, a chem drug! That's what my hemotologist is trying on me, try going to a hemotologist versus a pulmonary doc, they seem to only use prednisone or methatrexate, which do little for bone involvement of Sarcoid, sarcoid has eaten my bones away in my hands and feet. > Claude, > > So far, they haven't put this name with the " bone pain " of my sarcoidosis. I too like most of us, have spent years on high doses of pred. My last ct of my lungs showed multiple fractions of my ribs-- and a " high amount " of calcifications of the costol-cartlidge throughout my ribcage. > > I know Quint has had to have his hips replaced, and I think we've got another couple of people that have serious problems because of the years on prednisone. > > I'm sure that Quint will try to answer you if he's able. I know he's in Florida at the moment-- so hopefully he is " plugged in. " > > Tracie > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Thank you very much ! ! >>> bcox2224@... 4:20:15 PM 6/15/04 >>> Hello: This is Bill in Denver....I have osseous sarcoidosis. The bone pain may be symptoms of the same disease....if it is....you need to contact Lee Newman MD. @ National Jewish Research Center.....Osseous Sarcoidosis is very rare.... The OS is throughout my entire skelatal system....mostly in the spine and in the ribs...hope this helpstiodaat@... wrote: Claude,So far, they haven't put this name with the "bone pain" of my sarcoidosis. I too like most of us, have spent years on high doses of pred. My last ct of my lungs showed multiple fractions of my ribs-- and a "high amount" of calcifications of the costol-cartlidge throughout my ribcage. I know Quint has had to have his hips replaced, and I think we've got another couple of people that have serious problems because of the years on prednisone.I'm sure that Quint will try to answer you if he's able. I know he's in Florida at the moment-- so hopefully he is "plugged in."Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Thank you very much ! ! >>> bcox2224@... 4:20:15 PM 6/15/04 >>> Hello: This is Bill in Denver....I have osseous sarcoidosis. The bone pain may be symptoms of the same disease....if it is....you need to contact Lee Newman MD. @ National Jewish Research Center.....Osseous Sarcoidosis is very rare.... The OS is throughout my entire skelatal system....mostly in the spine and in the ribs...hope this helpstiodaat@... wrote: Claude,So far, they haven't put this name with the "bone pain" of my sarcoidosis. I too like most of us, have spent years on high doses of pred. My last ct of my lungs showed multiple fractions of my ribs-- and a "high amount" of calcifications of the costol-cartlidge throughout my ribcage. I know Quint has had to have his hips replaced, and I think we've got another couple of people that have serious problems because of the years on prednisone.I'm sure that Quint will try to answer you if he's able. I know he's in Florida at the moment-- so hopefully he is "plugged in."Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 thank you>>> yeshua66@... 5:53:41 PM 6/15/04 >>>You may be a candidate for Rituxin, a chem drug! That's what myhemotologist is trying on me, try going to a hemotologist versus apulmonary doc, they seem to only use prednisone or methatrexate, whichdo little for bone involvement of Sarcoid, sarcoid has eaten my bonesaway in my hands and feet.> Claude,> > So far, they haven't put this name with the "bone pain" of mysarcoidosis. I too like most of us, have spent years on high doses ofpred. My last ct of my lungs showed multiple fractions of my ribs--and a "high amount" of calcifications of the costol-cartlidgethroughout my ribcage. > > I know Quint has had to have his hips replaced, and I think we'vegot another couple of people that have serious problems because of theyears on prednisone.> > I'm sure that Quint will try to answer you if he's able. I knowhe's in Florida at the moment-- so hopefully he is "plugged in."> > Tracie > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php> > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
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