Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 The one good indicator that is consistent with the Dx of MCTD is an anti-body U1-RNP. That is probably what the workup will look for. UIP/LCH 5.06 > > > > > > > > I have just seen a new doctor who believes i have mixed tissue > > > > connective disease, explains why i was never quite lupus, never > > quite > > > > scleraderma, > > > > Wants to treat me with prednisone and cytoxan, any comments. > > > > > > > > tried going back to work, quit after 4 days still recuperating. > > > > > > > > mary jo, uip, may 07 saskatchewan > > > > > > > > > > > > > > > > > > > > ______________________________________________________________________ > __ > > Meet the new AOL.ca. Free radio, music, videos, news & > entertainment ? with a Canadian perspective. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 The one good indicator that is consistent with the Dx of MCTD is an anti-body U1-RNP. That is probably what the workup will look for. UIP/LCH 5.06 > > > > > > > > I have just seen a new doctor who believes i have mixed tissue > > > > connective disease, explains why i was never quite lupus, never > > quite > > > > scleraderma, > > > > Wants to treat me with prednisone and cytoxan, any comments. > > > > > > > > tried going back to work, quit after 4 days still recuperating. > > > > > > > > mary jo, uip, may 07 saskatchewan > > > > > > > > > > > > > > > > > > > > ______________________________________________________________________ > __ > > Meet the new AOL.ca. Free radio, music, videos, news & > entertainment ? with a Canadian perspective. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 The one good indicator that is consistent with the Dx of MCTD is an anti-body U1-RNP. That is probably what the workup will look for. UIP/LCH 5.06 > > > > > > > > I have just seen a new doctor who believes i have mixed tissue > > > > connective disease, explains why i was never quite lupus, never > > quite > > > > scleraderma, > > > > Wants to treat me with prednisone and cytoxan, any comments. > > > > > > > > tried going back to work, quit after 4 days still recuperating. > > > > > > > > mary jo, uip, may 07 saskatchewan > > > > > > > > > > > > > > > > > > > > ______________________________________________________________________ > __ > > Meet the new AOL.ca. Free radio, music, videos, news & > entertainment ? with a Canadian perspective. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 jo, my name is Dan and six years ago I was diagnosed with mixed connective tissue disease and pulmonary fibrosis. I was was taking cytoxan for two and a half years and that stabilized MCTD and PF. I was also taking prednisone, which I am still on. The cytoxan pills, (I was on 150mg per day), were affective and had a few side affects, I would feel bad for a few hours after taking it. This felt like flu-like symptoms. My immune system was reduced in functioning which made me suspect able to catching anything and healing slowly. I would avoid anyone sick and small children. I became anemic and had to take other medications to correct concerns. I had to drink 48 oz of water per day to flush the cytoxan out of my system. This cocktail of medication stabilized my condition and, if I had to, would do it again. I would suggest using the internet to investigate cytoxan and ask questions. I hope this helps Dan maryjothibodeau wrote: I have just seen a new doctor who believes i have mixed tissue connective disease, explains why i was never quite lupus, never quite scleraderma, Wants to treat me with prednisone and cytoxan, any comments.tried going back to work, quit after 4 days still recuperating.mary jo, uip, may 07 saskatchewan Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hi Gang I guess we keep on learning even if you are an old fart like me. I was diganosed with Polymositis in 12/98 and I know a lot about it but didn't know it was a classic connective tissue diseases till just now when I did a search for MCTD. I new my UIP was caused by the PM. Thirty percent of people with PM get a lung desease P PM 12/98 UIP 8/00 PH 3/06The classic immune-related connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis Roman wrote: jo, my name is Dan and six years ago I was diagnosed with mixed connective tissue disease and pulmonary fibrosis. I was was taking cytoxan for two and a half years and that stabilized MCTD and PF. I was also taking prednisone, which I am still on. The cytoxan pills, (I was on 150mg per day), were affective and had a few side affects, I would feel bad for a few hours after taking it. This felt like flu-like symptoms. My immune system was reduced in functioning which made me suspect able to catching anything and healing slowly. I would avoid anyone sick and small children. I became anemic and had to take other medications to correct concerns. I had to drink 48 oz of water per day to flush the cytoxan out of my system. This cocktail of medication stabilized my condition and, if I had to, would do it again. I would suggest using the internet to investigate cytoxan and ask questions. I hope this helps Dan maryjothibodeau <thibodeausasktel (DOT) net> wrote: I have just seen a new doctor who believes i have mixed tissue connective disease, explains why i was never quite lupus, never quite scleraderma, Wants to treat me with prednisone and cytoxan, any comments.tried going back to work, quit after 4 days still recuperating.mary jo, uip, may 07 saskatchewan Got a little couch potato? Check out fun summer activities for kids. Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hi Gang I guess we keep on learning even if you are an old fart like me. I was diganosed with Polymositis in 12/98 and I know a lot about it but didn't know it was a classic connective tissue diseases till just now when I did a search for MCTD. I new my UIP was caused by the PM. Thirty percent of people with PM get a lung desease P PM 12/98 UIP 8/00 PH 3/06The classic immune-related connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis Roman wrote: jo, my name is Dan and six years ago I was diagnosed with mixed connective tissue disease and pulmonary fibrosis. I was was taking cytoxan for two and a half years and that stabilized MCTD and PF. I was also taking prednisone, which I am still on. The cytoxan pills, (I was on 150mg per day), were affective and had a few side affects, I would feel bad for a few hours after taking it. This felt like flu-like symptoms. My immune system was reduced in functioning which made me suspect able to catching anything and healing slowly. I would avoid anyone sick and small children. I became anemic and had to take other medications to correct concerns. I had to drink 48 oz of water per day to flush the cytoxan out of my system. This cocktail of medication stabilized my condition and, if I had to, would do it again. I would suggest using the internet to investigate cytoxan and ask questions. I hope this helps Dan maryjothibodeau <thibodeausasktel (DOT) net> wrote: I have just seen a new doctor who believes i have mixed tissue connective disease, explains why i was never quite lupus, never quite scleraderma, Wants to treat me with prednisone and cytoxan, any comments.tried going back to work, quit after 4 days still recuperating.mary jo, uip, may 07 saskatchewan Got a little couch potato? Check out fun summer activities for kids. Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hi , I have been meaning to tell you congrats on your porch. I want to get out so bad. right now it's 94 on the porch. I have been out in the early mornings a few times but it gets so hot so quick. I hope y'all get to enjoy it every day. I know I will when this weather breaks. I don't have a swing. I do have a hammock. I have quit reading about this disease for a while. My poor brain can't handle anymore. It is what it is and I can't change it. You take care of you and stay well. Love and Prayers, Peggy ipf 6/04 Florida " Worry looks around, Sorry looks back, Faith looks up. " Hi Gang I guess we keep on learning even if you are an old fart like me. I was diganosed with Polymositis in 12/98 and I know a lot about it but didn't know it was a classic connective tissue diseases till just now when I did a search for MCTD. I new my UIP was caused by the PM. Thirty percent of people with PM get a lung desease P PM 12/98 UIP 8/00 PH 3/06 The classic immune-related connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis Roman wrote: jo, my name is Dan and six years ago I was diagnosed with mixed connective tissue disease and pulmonary fibrosis. I was was taking cytoxan for two and a half years and that stabilized MCTD and PF. I was also taking prednisone, which I am still on. The cytoxan pills, (I was on 150mg per day), were affective and had a few side affects, I would feel bad for a few hours after taking it. This felt like flu- like symptoms. My immune system was reduced in functioning which made me suspect able to catching anything and healing slowly. I would avoid anyone sick and small children. I became anemic and had to take other medications to correct concerns. I had to drink 48 oz of water per day to flush the cytoxan out of my system. This cocktail of medication stabilized my condition and, if I had to, would do it again. I would suggest using the internet to investigate cytoxan and ask questions. I hope this helps Dan maryjothibodeau wrote: I have just seen a new doctor who believes i have mixed tissue connective disease, explains why i was never quite lupus, never quite scleraderma, Wants to treat me with prednisone and cytoxan, any comments. tried going back to work, quit after 4 days still recuperating. mary jo, uip, may 07 saskatchewan Got a little couch potato? Check out fun summer activities for kids. Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hi , I have been meaning to tell you congrats on your porch. I want to get out so bad. right now it's 94 on the porch. I have been out in the early mornings a few times but it gets so hot so quick. I hope y'all get to enjoy it every day. I know I will when this weather breaks. I don't have a swing. I do have a hammock. I have quit reading about this disease for a while. My poor brain can't handle anymore. It is what it is and I can't change it. You take care of you and stay well. Love and Prayers, Peggy ipf 6/04 Florida " Worry looks around, Sorry looks back, Faith looks up. " Hi Gang I guess we keep on learning even if you are an old fart like me. I was diganosed with Polymositis in 12/98 and I know a lot about it but didn't know it was a classic connective tissue diseases till just now when I did a search for MCTD. I new my UIP was caused by the PM. Thirty percent of people with PM get a lung desease P PM 12/98 UIP 8/00 PH 3/06 The classic immune-related connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis Roman wrote: jo, my name is Dan and six years ago I was diagnosed with mixed connective tissue disease and pulmonary fibrosis. I was was taking cytoxan for two and a half years and that stabilized MCTD and PF. I was also taking prednisone, which I am still on. The cytoxan pills, (I was on 150mg per day), were affective and had a few side affects, I would feel bad for a few hours after taking it. This felt like flu- like symptoms. My immune system was reduced in functioning which made me suspect able to catching anything and healing slowly. I would avoid anyone sick and small children. I became anemic and had to take other medications to correct concerns. I had to drink 48 oz of water per day to flush the cytoxan out of my system. This cocktail of medication stabilized my condition and, if I had to, would do it again. I would suggest using the internet to investigate cytoxan and ask questions. I hope this helps Dan maryjothibodeau wrote: I have just seen a new doctor who believes i have mixed tissue connective disease, explains why i was never quite lupus, never quite scleraderma, Wants to treat me with prednisone and cytoxan, any comments. tried going back to work, quit after 4 days still recuperating. mary jo, uip, may 07 saskatchewan Got a little couch potato? Check out fun summer activities for kids. Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hi , I have been meaning to tell you congrats on your porch. I want to get out so bad. right now it's 94 on the porch. I have been out in the early mornings a few times but it gets so hot so quick. I hope y'all get to enjoy it every day. I know I will when this weather breaks. I don't have a swing. I do have a hammock. I have quit reading about this disease for a while. My poor brain can't handle anymore. It is what it is and I can't change it. You take care of you and stay well. Love and Prayers, Peggy ipf 6/04 Florida " Worry looks around, Sorry looks back, Faith looks up. " Hi Gang I guess we keep on learning even if you are an old fart like me. I was diganosed with Polymositis in 12/98 and I know a lot about it but didn't know it was a classic connective tissue diseases till just now when I did a search for MCTD. I new my UIP was caused by the PM. Thirty percent of people with PM get a lung desease P PM 12/98 UIP 8/00 PH 3/06 The classic immune-related connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis Roman wrote: jo, my name is Dan and six years ago I was diagnosed with mixed connective tissue disease and pulmonary fibrosis. I was was taking cytoxan for two and a half years and that stabilized MCTD and PF. I was also taking prednisone, which I am still on. The cytoxan pills, (I was on 150mg per day), were affective and had a few side affects, I would feel bad for a few hours after taking it. This felt like flu- like symptoms. My immune system was reduced in functioning which made me suspect able to catching anything and healing slowly. I would avoid anyone sick and small children. I became anemic and had to take other medications to correct concerns. I had to drink 48 oz of water per day to flush the cytoxan out of my system. This cocktail of medication stabilized my condition and, if I had to, would do it again. I would suggest using the internet to investigate cytoxan and ask questions. I hope this helps Dan maryjothibodeau wrote: I have just seen a new doctor who believes i have mixed tissue connective disease, explains why i was never quite lupus, never quite scleraderma, Wants to treat me with prednisone and cytoxan, any comments. tried going back to work, quit after 4 days still recuperating. mary jo, uip, may 07 saskatchewan Got a little couch potato? Check out fun summer activities for kids. Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 thanks, i find mctd harder to find info on than ipf, thanks for telling me your experience mary jo may 07 uip saskatchewan > I have just seen a new doctor who believes i have mixed tissue > connective disease, explains why i was never quite lupus, never quite > scleraderma, > Wants to treat me with prednisone and cytoxan, any comments. > > tried going back to work, quit after 4 days still recuperating. > > mary jo, uip, may 07 saskatchewan > > > > > > > --------------------------------- > Got a little couch potato? > Check out fun summer activities for kids. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 thanks, i find mctd harder to find info on than ipf, thanks for telling me your experience mary jo may 07 uip saskatchewan > I have just seen a new doctor who believes i have mixed tissue > connective disease, explains why i was never quite lupus, never quite > scleraderma, > Wants to treat me with prednisone and cytoxan, any comments. > > tried going back to work, quit after 4 days still recuperating. > > mary jo, uip, may 07 saskatchewan > > > > > > > --------------------------------- > Got a little couch potato? > Check out fun summer activities for kids. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Peggy: I sometimes think that is very good advice. My Mum always told me to save my energy for the things that I can do something about and don't waste energy on the things you can't. She said we all paddle with the oars we are given. I think she was a very wise woman. Re: anyone with mtcd Hi , I have been meaning to tell you congrats on your porch. I want to get out so bad.right now it's 94 on the porch. I have been out in the early mornings a few times but it gets so hot so quick. I hope y'all get to enjoy it every day. I know I will when this weather breaks. I don't have a swing. I do have a hammock.I have quit reading about this disease for a while. My poor brain can't handle anymore.It is what it is and I can't change it. You take care of you and stay well.Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."Hi Gang I guess we keep on learning even if you are an old fart like me. I was diganosed with Polymositis in 12/98 and I know a lot about it but didn't know it was a classic connective tissue diseases till just now when I did a search for MCTD. I new my UIP was caused by the PM. Thirty percent of people with PM get a lung desease P PM 12/98 UIP 8/00 PH 3/06The classic immune-related connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis Roman <dsroman8yahoo (DOT) com> wrote:jo, my name is Dan and six years ago I was diagnosed with mixed connective tissue disease and pulmonary fibrosis. I was was taking cytoxan for two and a half years and that stabilized MCTD and PF. I was also taking prednisone, which I am still on. The cytoxan pills, (I was on 150mg per day), were affective and had a few side affects, I would feel bad for a few hours after taking it. This felt like flu- like symptoms. My immune system was reduced in functioning which made me suspect able to catching anything and healing slowly. I would avoid anyone sick and small children. I became anemic and had to take other medications to correct concerns. I had to drink 48 oz of water per day to flush the cytoxan out of my system. This cocktail of medication stabilized my condition and, if I had to, would do it again.I would suggest using the internet to investigate cytoxan and ask questions.I hope this helpsDanmaryjothibodeau <thibodeausasktel (DOT) net> wrote:I have just seen a new doctor who believes i have mixed tissueconnective disease, explains why i was never quite lupus, never quitescleraderma,Wants to treat me with prednisone and cytoxan, any comments.tried going back to work, quit after 4 days still recuperating.mary jo, uip, may 07 saskatchewanGot a little couch potato?Check out fun summer activities for kids.Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV. Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Peggy: I sometimes think that is very good advice. My Mum always told me to save my energy for the things that I can do something about and don't waste energy on the things you can't. She said we all paddle with the oars we are given. I think she was a very wise woman. Re: anyone with mtcd Hi , I have been meaning to tell you congrats on your porch. I want to get out so bad.right now it's 94 on the porch. I have been out in the early mornings a few times but it gets so hot so quick. I hope y'all get to enjoy it every day. I know I will when this weather breaks. I don't have a swing. I do have a hammock.I have quit reading about this disease for a while. My poor brain can't handle anymore.It is what it is and I can't change it. You take care of you and stay well.Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."Hi Gang I guess we keep on learning even if you are an old fart like me. I was diganosed with Polymositis in 12/98 and I know a lot about it but didn't know it was a classic connective tissue diseases till just now when I did a search for MCTD. I new my UIP was caused by the PM. Thirty percent of people with PM get a lung desease P PM 12/98 UIP 8/00 PH 3/06The classic immune-related connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis Roman <dsroman8yahoo (DOT) com> wrote:jo, my name is Dan and six years ago I was diagnosed with mixed connective tissue disease and pulmonary fibrosis. I was was taking cytoxan for two and a half years and that stabilized MCTD and PF. I was also taking prednisone, which I am still on. The cytoxan pills, (I was on 150mg per day), were affective and had a few side affects, I would feel bad for a few hours after taking it. This felt like flu- like symptoms. My immune system was reduced in functioning which made me suspect able to catching anything and healing slowly. I would avoid anyone sick and small children. I became anemic and had to take other medications to correct concerns. I had to drink 48 oz of water per day to flush the cytoxan out of my system. This cocktail of medication stabilized my condition and, if I had to, would do it again.I would suggest using the internet to investigate cytoxan and ask questions.I hope this helpsDanmaryjothibodeau <thibodeausasktel (DOT) net> wrote:I have just seen a new doctor who believes i have mixed tissueconnective disease, explains why i was never quite lupus, never quitescleraderma,Wants to treat me with prednisone and cytoxan, any comments.tried going back to work, quit after 4 days still recuperating.mary jo, uip, may 07 saskatchewanGot a little couch potato?Check out fun summer activities for kids.Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV. Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Peggy: I sometimes think that is very good advice. My Mum always told me to save my energy for the things that I can do something about and don't waste energy on the things you can't. She said we all paddle with the oars we are given. I think she was a very wise woman. Re: anyone with mtcd Hi , I have been meaning to tell you congrats on your porch. I want to get out so bad.right now it's 94 on the porch. I have been out in the early mornings a few times but it gets so hot so quick. I hope y'all get to enjoy it every day. I know I will when this weather breaks. I don't have a swing. I do have a hammock.I have quit reading about this disease for a while. My poor brain can't handle anymore.It is what it is and I can't change it. You take care of you and stay well.Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."Hi Gang I guess we keep on learning even if you are an old fart like me. I was diganosed with Polymositis in 12/98 and I know a lot about it but didn't know it was a classic connective tissue diseases till just now when I did a search for MCTD. I new my UIP was caused by the PM. Thirty percent of people with PM get a lung desease P PM 12/98 UIP 8/00 PH 3/06The classic immune-related connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis Roman <dsroman8yahoo (DOT) com> wrote:jo, my name is Dan and six years ago I was diagnosed with mixed connective tissue disease and pulmonary fibrosis. I was was taking cytoxan for two and a half years and that stabilized MCTD and PF. I was also taking prednisone, which I am still on. The cytoxan pills, (I was on 150mg per day), were affective and had a few side affects, I would feel bad for a few hours after taking it. This felt like flu- like symptoms. My immune system was reduced in functioning which made me suspect able to catching anything and healing slowly. I would avoid anyone sick and small children. I became anemic and had to take other medications to correct concerns. I had to drink 48 oz of water per day to flush the cytoxan out of my system. This cocktail of medication stabilized my condition and, if I had to, would do it again.I would suggest using the internet to investigate cytoxan and ask questions.I hope this helpsDanmaryjothibodeau <thibodeausasktel (DOT) net> wrote:I have just seen a new doctor who believes i have mixed tissueconnective disease, explains why i was never quite lupus, never quitescleraderma,Wants to treat me with prednisone and cytoxan, any comments.tried going back to work, quit after 4 days still recuperating.mary jo, uip, may 07 saskatchewanGot a little couch potato?Check out fun summer activities for kids.Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV. Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Peggy and Diane, I agree with you both. Every now and then another symptom will cue the docs to test for still another disease. Usually it isn't anything that can be fixed. Maybe it is my imagination but every ailment that comes up it seems the treatment is " more prednisone " . Every so often I call a moratorium on docs,except in crisis situations of course, and plan a couple of months in a row without seeing anyone. It is delightful, but I still need monthly blood work so I'm never quite free. I see my lung doc quarterly and my pcp more often but if I'm feeling good I can put my pcp off a few weeks. Except for the tubes in my nose, secondary diabetes, fibromyalgia, pulmonary hypertension, prednisone caused myalgia, I forget I'm even sick. lol Kathie in WA NSIP '95 > I have just seen a new doctor who believes i have mixed tissue > connective disease, explains why i was never quite lupus, never quite > scleraderma, > Wants to treat me with prednisone and cytoxan, any comments. > > tried going back to work, quit after 4 days still recuperating. > > mary jo, uip, may 07 saskatchewan > > Got a little couch potato? > Check out fun summer activities for kids. > > Tonight's top picks. What will you watch tonight? Preview the hottest > shows on Yahoo! TV. > > > > > > Get news delivered with the All new Yahoo! Mail. Enjoy RSS feeds right on your Mail page. Start today at http://mrd.mail.yahoo.com/try_beta?.intl=ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Peggy and Diane, I agree with you both. Every now and then another symptom will cue the docs to test for still another disease. Usually it isn't anything that can be fixed. Maybe it is my imagination but every ailment that comes up it seems the treatment is " more prednisone " . Every so often I call a moratorium on docs,except in crisis situations of course, and plan a couple of months in a row without seeing anyone. It is delightful, but I still need monthly blood work so I'm never quite free. I see my lung doc quarterly and my pcp more often but if I'm feeling good I can put my pcp off a few weeks. Except for the tubes in my nose, secondary diabetes, fibromyalgia, pulmonary hypertension, prednisone caused myalgia, I forget I'm even sick. lol Kathie in WA NSIP '95 > I have just seen a new doctor who believes i have mixed tissue > connective disease, explains why i was never quite lupus, never quite > scleraderma, > Wants to treat me with prednisone and cytoxan, any comments. > > tried going back to work, quit after 4 days still recuperating. > > mary jo, uip, may 07 saskatchewan > > Got a little couch potato? > Check out fun summer activities for kids. > > Tonight's top picks. What will you watch tonight? Preview the hottest > shows on Yahoo! TV. > > > > > > Get news delivered with the All new Yahoo! Mail. Enjoy RSS feeds right on your Mail page. Start today at http://mrd.mail.yahoo.com/try_beta?.intl=ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Peggy and Diane, I agree with you both. Every now and then another symptom will cue the docs to test for still another disease. Usually it isn't anything that can be fixed. Maybe it is my imagination but every ailment that comes up it seems the treatment is " more prednisone " . Every so often I call a moratorium on docs,except in crisis situations of course, and plan a couple of months in a row without seeing anyone. It is delightful, but I still need monthly blood work so I'm never quite free. I see my lung doc quarterly and my pcp more often but if I'm feeling good I can put my pcp off a few weeks. Except for the tubes in my nose, secondary diabetes, fibromyalgia, pulmonary hypertension, prednisone caused myalgia, I forget I'm even sick. lol Kathie in WA NSIP '95 > I have just seen a new doctor who believes i have mixed tissue > connective disease, explains why i was never quite lupus, never quite > scleraderma, > Wants to treat me with prednisone and cytoxan, any comments. > > tried going back to work, quit after 4 days still recuperating. > > mary jo, uip, may 07 saskatchewan > > Got a little couch potato? > Check out fun summer activities for kids. > > Tonight's top picks. What will you watch tonight? Preview the hottest > shows on Yahoo! TV. > > > > > > Get news delivered with the All new Yahoo! Mail. Enjoy RSS feeds right on your Mail page. Start today at http://mrd.mail.yahoo.com/try_beta?.intl=ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hi Peggy It is 71 on the Porch today at 3;00 PM. Have been sitting out watching the power co. replace all the overhead lines on the block No power for about a hour twice so on the travel tanks. I think they are done now P UIP 8/00 PH 3/06Peggy wrote: Hi , I have been meaning to tell you congrats on your porch. I want to get out so bad. right now it's 94 on the porch. I have been out in the early mornings a few times but it gets so hot so quick. I hope y'all get to enjoy it every day. I know I will when this weather breaks. I don't have a swing. I do have a hammock. I have quit reading about this disease for a while. My poor brain can't handle anymore. It is what it is and I can't change it. You take care of you and stay well. Love and Prayers, Peggy ipf 6/04 Florida "Worry looks around, Sorry looks back, Faith looks up." Hi Gang I guess we keep on learning even if you are an old fart like me. I was diganosed with Polymositis in 12/98 and I know a lot about it but didn't know it was a classic connective tissue diseases till just now when I did a search for MCTD. I new my UIP was caused by the PM. Thirty percent of people with PM get a lung desease P PM 12/98 UIP 8/00 PH 3/06 The classic immune-related connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis Roman <dsroman8> wrote: jo, my name is Dan and six years ago I was diagnosed with mixed connective tissue disease and pulmonary fibrosis. I was was taking cytoxan for two and a half years and that stabilized MCTD and PF. I was also taking prednisone, which I am still on. The cytoxan pills, (I was on 150mg per day), were affective and had a few side affects, I would feel bad for a few hours after taking it. This felt like flu- like symptoms. My immune system was reduced in functioning which made me suspect able to catching anything and healing slowly. I would avoid anyone sick and small children. I became anemic and had to take other medications to correct concerns. I had to drink 48 oz of water per day to flush the cytoxan out of my system. This cocktail of medication stabilized my condition and, if I had to, would do it again. I would suggest using the internet to investigate cytoxan and ask questions. I hope this helps Dan maryjothibodeau <thibodeausasktel (DOT) net> wrote: I have just seen a new doctor who believes i have mixed tissue connective disease, explains why i was never quite lupus, never quite scleraderma, Wants to treat me with prednisone and cytoxan, any comments. tried going back to work, quit after 4 days still recuperating. mary jo, uip, may 07 saskatchewan Got a little couch potato? Check out fun summer activities for kids. Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV. Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hi Peggy It is 71 on the Porch today at 3;00 PM. Have been sitting out watching the power co. replace all the overhead lines on the block No power for about a hour twice so on the travel tanks. I think they are done now P UIP 8/00 PH 3/06Peggy wrote: Hi , I have been meaning to tell you congrats on your porch. I want to get out so bad. right now it's 94 on the porch. I have been out in the early mornings a few times but it gets so hot so quick. I hope y'all get to enjoy it every day. I know I will when this weather breaks. I don't have a swing. I do have a hammock. I have quit reading about this disease for a while. My poor brain can't handle anymore. It is what it is and I can't change it. You take care of you and stay well. Love and Prayers, Peggy ipf 6/04 Florida "Worry looks around, Sorry looks back, Faith looks up." Hi Gang I guess we keep on learning even if you are an old fart like me. I was diganosed with Polymositis in 12/98 and I know a lot about it but didn't know it was a classic connective tissue diseases till just now when I did a search for MCTD. I new my UIP was caused by the PM. Thirty percent of people with PM get a lung desease P PM 12/98 UIP 8/00 PH 3/06 The classic immune-related connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis Roman <dsroman8> wrote: jo, my name is Dan and six years ago I was diagnosed with mixed connective tissue disease and pulmonary fibrosis. I was was taking cytoxan for two and a half years and that stabilized MCTD and PF. I was also taking prednisone, which I am still on. The cytoxan pills, (I was on 150mg per day), were affective and had a few side affects, I would feel bad for a few hours after taking it. This felt like flu- like symptoms. My immune system was reduced in functioning which made me suspect able to catching anything and healing slowly. I would avoid anyone sick and small children. I became anemic and had to take other medications to correct concerns. I had to drink 48 oz of water per day to flush the cytoxan out of my system. This cocktail of medication stabilized my condition and, if I had to, would do it again. I would suggest using the internet to investigate cytoxan and ask questions. I hope this helps Dan maryjothibodeau <thibodeausasktel (DOT) net> wrote: I have just seen a new doctor who believes i have mixed tissue connective disease, explains why i was never quite lupus, never quite scleraderma, Wants to treat me with prednisone and cytoxan, any comments. tried going back to work, quit after 4 days still recuperating. mary jo, uip, may 07 saskatchewan Got a little couch potato? Check out fun summer activities for kids. Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV. Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hi Peggy It is 71 on the Porch today at 3;00 PM. Have been sitting out watching the power co. replace all the overhead lines on the block No power for about a hour twice so on the travel tanks. I think they are done now P UIP 8/00 PH 3/06Peggy wrote: Hi , I have been meaning to tell you congrats on your porch. I want to get out so bad. right now it's 94 on the porch. I have been out in the early mornings a few times but it gets so hot so quick. I hope y'all get to enjoy it every day. I know I will when this weather breaks. I don't have a swing. I do have a hammock. I have quit reading about this disease for a while. My poor brain can't handle anymore. It is what it is and I can't change it. You take care of you and stay well. Love and Prayers, Peggy ipf 6/04 Florida "Worry looks around, Sorry looks back, Faith looks up." Hi Gang I guess we keep on learning even if you are an old fart like me. I was diganosed with Polymositis in 12/98 and I know a lot about it but didn't know it was a classic connective tissue diseases till just now when I did a search for MCTD. I new my UIP was caused by the PM. Thirty percent of people with PM get a lung desease P PM 12/98 UIP 8/00 PH 3/06 The classic immune-related connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis Roman <dsroman8> wrote: jo, my name is Dan and six years ago I was diagnosed with mixed connective tissue disease and pulmonary fibrosis. I was was taking cytoxan for two and a half years and that stabilized MCTD and PF. I was also taking prednisone, which I am still on. The cytoxan pills, (I was on 150mg per day), were affective and had a few side affects, I would feel bad for a few hours after taking it. This felt like flu- like symptoms. My immune system was reduced in functioning which made me suspect able to catching anything and healing slowly. I would avoid anyone sick and small children. I became anemic and had to take other medications to correct concerns. I had to drink 48 oz of water per day to flush the cytoxan out of my system. This cocktail of medication stabilized my condition and, if I had to, would do it again. I would suggest using the internet to investigate cytoxan and ask questions. I hope this helps Dan maryjothibodeau <thibodeausasktel (DOT) net> wrote: I have just seen a new doctor who believes i have mixed tissue connective disease, explains why i was never quite lupus, never quite scleraderma, Wants to treat me with prednisone and cytoxan, any comments. tried going back to work, quit after 4 days still recuperating. mary jo, uip, may 07 saskatchewan Got a little couch potato? Check out fun summer activities for kids. Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV. Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 Jo, Until I reread your posting I hadn't thought that so many medical conditions could be related in such a way. I have NSIP, Raynaud's is being looked at right now, I have had IBS for decades and am hypothyroid too!!!I'll be asking my Docs about the mctd at my next visit. We had assumed that the NSIP had a sudden onset...it would be interesting to find out if it came along because of the other issues...the Raynaud's is recent. Thanks for the information. Hope your week-end was great. Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley maryjothibodeau wrote: It's mixed Connective Tissue Disease, and there is blood work for it. Now realize I have only just heard of this and just started reading on it so I might be wrong, raynaud's is part like it is of lupus and scleroderma, but 2 doctors have checked me for these and don't believe I actually have them, i was told the thyroid, ibs, raynaud's, lung are all part of this, now she is doing a more thorough check of my heart and kidneys, (because of the recurring uti's), it's a disease the crossovers and has some symptoms of others but is it's own. You should mention it to doctors. I would also wonder if I were you, she says it's as rare as ipf, and I am lucky enough to have both. One blessing in disguise is being able to home with my 15 year old daughter this year instead of shift work. Jo, uip, may 07, saskatchewan > > > > > > I have just seen a new doctor who believes i have mixed tissue > > > connective disease, explains why i was never quite lupus, never > quite > > > scleraderma, > > > Wants to treat me with prednisone and cytoxan, any comments. > > > > > > tried going back to work, quit after 4 days still recuperating. > > > > > > mary jo, uip, may 07 saskatchewan > > > > > > > > > > > __________________________________________________________ __ > Meet the new AOL.ca. Free radio, music, videos, news & entertainment ? with a Canadian perspective. > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.32/1032 - Release Date: 9/26/2007 8:20 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 Jo, Until I reread your posting I hadn't thought that so many medical conditions could be related in such a way. I have NSIP, Raynaud's is being looked at right now, I have had IBS for decades and am hypothyroid too!!!I'll be asking my Docs about the mctd at my next visit. We had assumed that the NSIP had a sudden onset...it would be interesting to find out if it came along because of the other issues...the Raynaud's is recent. Thanks for the information. Hope your week-end was great. Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley maryjothibodeau wrote: It's mixed Connective Tissue Disease, and there is blood work for it. Now realize I have only just heard of this and just started reading on it so I might be wrong, raynaud's is part like it is of lupus and scleroderma, but 2 doctors have checked me for these and don't believe I actually have them, i was told the thyroid, ibs, raynaud's, lung are all part of this, now she is doing a more thorough check of my heart and kidneys, (because of the recurring uti's), it's a disease the crossovers and has some symptoms of others but is it's own. You should mention it to doctors. I would also wonder if I were you, she says it's as rare as ipf, and I am lucky enough to have both. One blessing in disguise is being able to home with my 15 year old daughter this year instead of shift work. Jo, uip, may 07, saskatchewan > > > > > > I have just seen a new doctor who believes i have mixed tissue > > > connective disease, explains why i was never quite lupus, never > quite > > > scleraderma, > > > Wants to treat me with prednisone and cytoxan, any comments. > > > > > > tried going back to work, quit after 4 days still recuperating. > > > > > > mary jo, uip, may 07 saskatchewan > > > > > > > > > > > __________________________________________________________ __ > Meet the new AOL.ca. Free radio, music, videos, news & entertainment ? with a Canadian perspective. > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.32/1032 - Release Date: 9/26/2007 8:20 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 Jo, Until I reread your posting I hadn't thought that so many medical conditions could be related in such a way. I have NSIP, Raynaud's is being looked at right now, I have had IBS for decades and am hypothyroid too!!!I'll be asking my Docs about the mctd at my next visit. We had assumed that the NSIP had a sudden onset...it would be interesting to find out if it came along because of the other issues...the Raynaud's is recent. Thanks for the information. Hope your week-end was great. Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley maryjothibodeau wrote: It's mixed Connective Tissue Disease, and there is blood work for it. Now realize I have only just heard of this and just started reading on it so I might be wrong, raynaud's is part like it is of lupus and scleroderma, but 2 doctors have checked me for these and don't believe I actually have them, i was told the thyroid, ibs, raynaud's, lung are all part of this, now she is doing a more thorough check of my heart and kidneys, (because of the recurring uti's), it's a disease the crossovers and has some symptoms of others but is it's own. You should mention it to doctors. I would also wonder if I were you, she says it's as rare as ipf, and I am lucky enough to have both. One blessing in disguise is being able to home with my 15 year old daughter this year instead of shift work. Jo, uip, may 07, saskatchewan > > > > > > I have just seen a new doctor who believes i have mixed tissue > > > connective disease, explains why i was never quite lupus, never > quite > > > scleraderma, > > > Wants to treat me with prednisone and cytoxan, any comments. > > > > > > tried going back to work, quit after 4 days still recuperating. > > > > > > mary jo, uip, may 07 saskatchewan > > > > > > > > > > > __________________________________________________________ __ > Meet the new AOL.ca. Free radio, music, videos, news & entertainment ? with a Canadian perspective. > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.32/1032 - Release Date: 9/26/2007 8:20 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 Ah ha....I had my IBS today! Joy > > > > > > > > > > I have just seen a new doctor who believes i have mixed tissue > > > > > connective disease, explains why i was never quite lupus, never > > > quite > > > > > scleraderma, > > > > > Wants to treat me with prednisone and cytoxan, any comments. > > > > > > > > > > tried going back to work, quit after 4 days still recuperating. > > > > > > > > > > mary jo, uip, may 07 saskatchewan > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > > __ > > > Meet the new AOL.ca. Free radio, music, videos, news & > > entertainment ? with a Canadian perspective. > > > > > > > > > > >------------------------------------------------------------------- ----- > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.488 / Virus Database: 269.13.32/1032 - Release Date: 9/26/2007 8:20 PM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 Ah ha....I had my IBS today! Joy > > > > > > > > > > I have just seen a new doctor who believes i have mixed tissue > > > > > connective disease, explains why i was never quite lupus, never > > > quite > > > > > scleraderma, > > > > > Wants to treat me with prednisone and cytoxan, any comments. > > > > > > > > > > tried going back to work, quit after 4 days still recuperating. > > > > > > > > > > mary jo, uip, may 07 saskatchewan > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > > __ > > > Meet the new AOL.ca. Free radio, music, videos, news & > > entertainment ? with a Canadian perspective. > > > > > > > > > > >------------------------------------------------------------------- ----- > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.488 / Virus Database: 269.13.32/1032 - Release Date: 9/26/2007 8:20 PM > > > > > Quote Link to comment Share on other sites More sharing options...
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