Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 jo, I was diagnosed with diffuse systemic scleroderma earlier this year after I tested positive for some weird blood marker called anti-SCL-70 antibody. The disease has primarily effected my lungs and esophagus at this time although it will eventually effect every organ except my brain since the brain is the only organ that does not contain connective tissue. Interestingly I have no skin involvement which made my diagnosis more elusive. I am currently taking cytoxan (intravenously), fourth monthly infusion tomorrow. I have thus far refused prednisone and will probably continue to do so. I really haven't noticed any tremendous improvement from the cytoxan, In December, I will have another CAT scan that will determine if the drug has stopped some of the progress of the disease. Side effects have been minimal - some tiredness, some nausea but that is controlled by yet more drugs. No hair loss or change of hair texture, I make sure I stay out of the sun for 7 - 10 days after the infusion because of side effects. I think the oral dosage has more side effects but I'm not sure. Hope this info is what you are looking for - if you have any specific questions, please feel free to email me here. Dunn, NJ Diffuse systemic scleroderma, pulmonary hypertensionSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 jo, I was diagnosed with diffuse systemic scleroderma earlier this year after I tested positive for some weird blood marker called anti-SCL-70 antibody. The disease has primarily effected my lungs and esophagus at this time although it will eventually effect every organ except my brain since the brain is the only organ that does not contain connective tissue. Interestingly I have no skin involvement which made my diagnosis more elusive. I am currently taking cytoxan (intravenously), fourth monthly infusion tomorrow. I have thus far refused prednisone and will probably continue to do so. I really haven't noticed any tremendous improvement from the cytoxan, In December, I will have another CAT scan that will determine if the drug has stopped some of the progress of the disease. Side effects have been minimal - some tiredness, some nausea but that is controlled by yet more drugs. No hair loss or change of hair texture, I make sure I stay out of the sun for 7 - 10 days after the infusion because of side effects. I think the oral dosage has more side effects but I'm not sure. Hope this info is what you are looking for - if you have any specific questions, please feel free to email me here. Dunn, NJ Diffuse systemic scleroderma, pulmonary hypertensionSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Jo, I think the absolute best thing I have done for my health this year was to quit work. I had to downsize a lot and learn how to live on a much stricter budget but it has been well worth it. I have no experience with your disease, but mine has slowed tremendously due to the prednisone. In the beginning I hated it and the weight gain, but I have learned that if I eat right I have no "puffiness" and the side effects are minimal. Without the prednisone I can only walk 90 seconds before my O2 level drops to 80. With the prednisone I can walk for 30 minutes before I drop to the low 90s. All of our experiences are so different, but I think the "no work", no stress and lots of rest applies to all of us. God bless you- Sarcoid/PF 3/2006 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 Sarcoid/PF 3/2006 Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Jo, I have mixed connective tissue disease. I was diagnosed at 33. I have RA, Sjogren's, Lupus Anticoagulant and Systemic Lupus....and who knows what else. The docs said at biopsy that my pulmonary fibrosis was due to Lupus. My rheumatologist at the time suggested Cytoxan. But, I refused and changed docs after that. He put me on Imuran instead, and later on Cellcept. I would never advise anyone against thier doctor's advice. It was just my choice at the time. There are people on this board who have taken or are taking Cytoxan. I do know that it is a common treatment for PF where autoimmune disease is present. At least you are getting some answers. When connective tissue disease is involved with fibrosis onset, you at least have some treatment alternatives. God bless you, Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> 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> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Jo, I have mixed connective tissue disease. I was diagnosed at 33. I have RA, Sjogren's, Lupus Anticoagulant and Systemic Lupus....and who knows what else. The docs said at biopsy that my pulmonary fibrosis was due to Lupus. My rheumatologist at the time suggested Cytoxan. But, I refused and changed docs after that. He put me on Imuran instead, and later on Cellcept. I would never advise anyone against thier doctor's advice. It was just my choice at the time. There are people on this board who have taken or are taking Cytoxan. I do know that it is a common treatment for PF where autoimmune disease is present. At least you are getting some answers. When connective tissue disease is involved with fibrosis onset, you at least have some treatment alternatives. God bless you, Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> 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> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Yes , I finally agree, i still am having a hard time accepting, but I am not going to work unless I am feeling really good for a long time, I believe I will agree to prednisone, but put a hold on cytoxan, I hope the weight gain isn't too much, but whatever my husband says he'll love me whatever size, but will i love myself 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 > > > > > > > Sarcoid/PF 3/2006 > > > --------------------------------- > Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Yes , I finally agree, i still am having a hard time accepting, but I am not going to work unless I am feeling really good for a long time, I believe I will agree to prednisone, but put a hold on cytoxan, I hope the weight gain isn't too much, but whatever my husband says he'll love me whatever size, but will i love myself 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 > > > > > > > Sarcoid/PF 3/2006 > > > --------------------------------- > Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Yes , I finally agree, i still am having a hard time accepting, but I am not going to work unless I am feeling really good for a long time, I believe I will agree to prednisone, but put a hold on cytoxan, I hope the weight gain isn't too much, but whatever my husband says he'll love me whatever size, but will i love myself 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 > > > > > > > Sarcoid/PF 3/2006 > > > --------------------------------- > Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Thanks Joyce, I really thought she'd find lupus or scleraderma not something inbetween, she said she just came back from a training workshop in states and the treatment for mtcd with pulmonary problems was prednisone and cytoxan, we decided to hold off for my 6 mon dx birthday in Nov., to see how stable I am, I will agree to something, just tired of the really highs and lows which is how I feel, seldom just normal. It's good to talk to you, been avoiding the site thinking I guess if i didn't talk about it i could ignore it. 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Thanks Joyce, I really thought she'd find lupus or scleraderma not something inbetween, she said she just came back from a training workshop in states and the treatment for mtcd with pulmonary problems was prednisone and cytoxan, we decided to hold off for my 6 mon dx birthday in Nov., to see how stable I am, I will agree to something, just tired of the really highs and lows which is how I feel, seldom just normal. It's good to talk to you, been avoiding the site thinking I guess if i didn't talk about it i could ignore it. 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Thanks Joyce, I really thought she'd find lupus or scleraderma not something inbetween, she said she just came back from a training workshop in states and the treatment for mtcd with pulmonary problems was prednisone and cytoxan, we decided to hold off for my 6 mon dx birthday in Nov., to see how stable I am, I will agree to something, just tired of the really highs and lows which is how I feel, seldom just normal. It's good to talk to you, been avoiding the site thinking I guess if i didn't talk about it i could ignore it. 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Jo, Don't stick your head in the sand. Use this time until November to make yourself smart. Read everything. Share what you know with us. Time is so important. Go to war, girl! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > 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> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Jo, Don't stick your head in the sand. Use this time until November to make yourself smart. Read everything. Share what you know with us. Time is so important. Go to war, girl! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > 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> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Jo, Don't stick your head in the sand. Use this time until November to make yourself smart. Read everything. Share what you know with us. Time is so important. Go to war, girl! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > 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> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 jo, I totally agree with what Joyce said below! Irene PF 03/07 Raynaud's Disease 09/07 Canada ---- Original Message ---- To: Breathe-Support Sent: Tue, 25 Sep 2007 9:14 pm Subject: Re: anyone with mtcd Jo, Don't stick your head in the sand. Use this time until November to make yourself smart. Read everything. Share what you know with us. Time is so important. Go to war, girl! Hugs, Joyce D. PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > > > > > 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 25, 2007 Report Share Posted September 25, 2007 jo, I totally agree with what Joyce said below! Irene PF 03/07 Raynaud's Disease 09/07 Canada ---- Original Message ---- To: Breathe-Support Sent: Tue, 25 Sep 2007 9:14 pm Subject: Re: anyone with mtcd Jo, Don't stick your head in the sand. Use this time until November to make yourself smart. Read everything. Share what you know with us. Time is so important. Go to war, girl! Hugs, Joyce D. PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > > > > > 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 25, 2007 Report Share Posted September 25, 2007 jo, I totally agree with what Joyce said below! Irene PF 03/07 Raynaud's Disease 09/07 Canada ---- Original Message ---- To: Breathe-Support Sent: Tue, 25 Sep 2007 9:14 pm Subject: Re: anyone with mtcd Jo, Don't stick your head in the sand. Use this time until November to make yourself smart. Read everything. Share what you know with us. Time is so important. Go to war, girl! Hugs, Joyce D. PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > > > > > 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 25, 2007 Report Share Posted September 25, 2007 jo, What is MTCD? It will sound kind of funny! these are diagnosis I've been given this year and have changed to NO/YES/MAYBE or a ??? answers. I've been told you might have Drug Induced Lupus. You might have Rheumatoid Arthritis. We definetely don't know to what extent..... Now in September, I found yes you do have Raynaud's Disease, so it was added to my list of medical conditions. Adding to my sense of humour because some days! It's like I'm on the games shows of Deal or NO Deal, Jeopardy, Who Wants to Be Millionnaire (they should change the title lets see now which disease you definetly have and you can win so much money). Or Wheel of Fortune (guess the letters of the disease we are giving you now! Irene PF 03/07 Raynaud's Disease 09/07 Canada ---- Original Message ---- To: Breathe-Support Sent: Tue, 25 Sep 2007 8:44 pm Subject: Re: anyone with mtcd Thanks Joyce, I really thought she'd find lupus or scleraderma not something inbetween, she said she just came back from a training workshop in states and the treatment for mtcd with pulmonary problems was prednisone and cytoxan, we decided to hold off for my 6 mon dx birthday in Nov., to see how stable I am, I will agree to something, just tired of the really highs and lows which is how I feel, seldom just normal. It's good to talk to you, been avoiding the site thinking I guess if i didn't talk about it i could ignore it. 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 jo, What is MTCD? It will sound kind of funny! these are diagnosis I've been given this year and have changed to NO/YES/MAYBE or a ??? answers. I've been told you might have Drug Induced Lupus. You might have Rheumatoid Arthritis. We definetely don't know to what extent..... Now in September, I found yes you do have Raynaud's Disease, so it was added to my list of medical conditions. Adding to my sense of humour because some days! It's like I'm on the games shows of Deal or NO Deal, Jeopardy, Who Wants to Be Millionnaire (they should change the title lets see now which disease you definetly have and you can win so much money). Or Wheel of Fortune (guess the letters of the disease we are giving you now! Irene PF 03/07 Raynaud's Disease 09/07 Canada ---- Original Message ---- To: Breathe-Support Sent: Tue, 25 Sep 2007 8:44 pm Subject: Re: anyone with mtcd Thanks Joyce, I really thought she'd find lupus or scleraderma not something inbetween, she said she just came back from a training workshop in states and the treatment for mtcd with pulmonary problems was prednisone and cytoxan, we decided to hold off for my 6 mon dx birthday in Nov., to see how stable I am, I will agree to something, just tired of the really highs and lows which is how I feel, seldom just normal. It's good to talk to you, been avoiding the site thinking I guess if i didn't talk about it i could ignore it. 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Yes well you wonder how it was all missed, IBS at 24, 2 thyroid disease at 25, the beginning of pneumonia bouts at 30, photosensitive at 41,fibroid cyst hysterectomy at 45, RLS at 46,raynaud's disease at 47 but i learnt to live around these disease with little complaints accept ibs until ipf, now i am told the mctd started wtih the thyroid at 24, maybe even earlier with the eczema of my teens., Now I am going to take care of me, we are trying to buy a house closer to town so i won't be out here by myself 24-7. I have a bad cold today also, But thanks, I will read and will learn 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Yes well you wonder how it was all missed, IBS at 24, 2 thyroid disease at 25, the beginning of pneumonia bouts at 30, photosensitive at 41,fibroid cyst hysterectomy at 45, RLS at 46,raynaud's disease at 47 but i learnt to live around these disease with little complaints accept ibs until ipf, now i am told the mctd started wtih the thyroid at 24, maybe even earlier with the eczema of my teens., Now I am going to take care of me, we are trying to buy a house closer to town so i won't be out here by myself 24-7. I have a bad cold today also, But thanks, I will read and will learn 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Yes well you wonder how it was all missed, IBS at 24, 2 thyroid disease at 25, the beginning of pneumonia bouts at 30, photosensitive at 41,fibroid cyst hysterectomy at 45, RLS at 46,raynaud's disease at 47 but i learnt to live around these disease with little complaints accept ibs until ipf, now i am told the mctd started wtih the thyroid at 24, maybe even earlier with the eczema of my teens., Now I am going to take care of me, we are trying to buy a house closer to town so i won't be out here by myself 24-7. I have a bad cold today also, But thanks, I will read and will learn 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 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. > Quote Link to comment Share on other sites More sharing options...
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