Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 Tom, Sherry, et all.in regard to Imuran....I've been on it since DX Summer of 2005. I take it and Prednisone and so many others that I have to keep a chart! Anyway..back to the Imuran..I started at 100 mg along with 40mg of Prednisone. Over the past 3 1/2 years I have been tapered down to 10 mg of Prednisone and now only 50 Imuran. These changes came in very very very small increments..and I've had to have monthly blood work to monitor liver, sugar, sodium, potassium, red and white blood cells. As I've said recently...I'm in the STABLE since DX..no negative changes in PFT's, HRCT, 6 minute walks.I've returned to using small hand and leg weights and the treadmill and I are becoming friendly again! I stopped going to the local "Y" because I kept getting sick from all the germy people. I have NSIP ( the fibriotic form they tell me) but for some reason, the Imuran and Prednisone have worked so far. I'm not planning to stop them unless more miserable side-effects crop up. ( as if osteoporosis, GERD, cognitive deficits, sleeplessness, thinning but curling hair, aren't bad enough) Considering the alternatives..I'll stay the course and play with my two little wonderful girls, make plans with Mike to do some traveling, see friends and family whenever I can. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Tom wrote: I have been on Imuran since last June and never have any side effect, although people say they have noticed memory loss. By the way, I have been on Imuran since last June and never have had any side effects. (lol - just in case, that was a valiant attempt at humor on my part lol again.) On a more serious note, do not judge how these darn drugs work on me. I think that I have a cast iron stomach and stainless steel liver. No matter what I take, my liver enzymes are always quite low and my stomach never acts up. Of course, I wish the same could be said for my lungs, my spleen, my kidney, my joints and my bone marrow. (knock on wood, they have been behaving pretty well of late, except the joints) My doc did start me on a lower dose to make sure I could tolerate it and then tweaked it up to the 150mg I am on now. Maybe that makes a difference. Tom from PA AOSD 2003; Asthma 2006; NSIP 2008; Sjogrens 2008 > > > > > > Sherry, > > > It's only been a couple of days on the Imuran and so far all I > have > > is nausea. Not horrible...haven't actually gotten sick just feel > > pretty lousy. The doctor told me I might have some nausea and to > call > > her if it lasts more than a few days or if I'm having trouble > keeping > > food down. > > > I just feel crummy and obviously don't have any kind of appetite. > > I'm sure it will pass as my body adjusts. > > > So really just waiting and seeing. > > > > > > I'm thinking of you and hoping the phone rings at the perfect > > moment! > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > > > > > ________________________________ > > > From: sherryjohnson16 <sherryjohnson16@> > > > To: Breathe-Support > > > Sent: Tuesday, January 27, 2009 9:50:32 AM > > > Subject: Lung Transplant > > > > > > > > > I know a few people on this site already know about my decision > to > > go > > > ahead & get listed for a lung transplant at Vanderbilt in > > Nashville. > > > Now the wait starts. I'm just going to finish packing my > suitcase, > > > put it in the guest bedroom, & live for awhile. I'm so tired > right > > > now of seeing doctors, tests, etc. It's time for something else. > > > > > > I'm going to take a "page" out of Gwynne's e-mails & say a few > > words > > > to some of you. > > > > > > Lou > > > > > > Hooray! Let's hope you continue to get your energy back & lose > your > > > terrible shortness of breath. It could be a miracle in the works. > > > > > > Bruce > > > > > > You give such good advice about just living your life. When I was > > > asked during the lung transplant evaluation about what I couldn't > > do > > > any longer, I really had to think about it. I said, "Well, I've > > > tried to focus for so long now (11 yrs) on what I could do, I've > > > forgotten what I could NOT do anymore." That's how one should > > really > > > think all the time, regardless of illness as age poses the same > > > problems. > > > > > > Sher/Peggy > > > > > > Oh my, I've discovered that both of you are crafty people too. I > > > love to hand embroider doing pillowcases, tablecloths, dresser > > > scarfs, anything I can find. I also crochet & must get back to my > > > prayer shawl ministry for church. Also, I quilt - even finished > one > > > for my oldest granddaughter for Christmas. That was a challenge > in > > > my condition, but I hand quilted the whole twin size quilt. So, > > keep > > > our fingers from getting stiff, please God I pray! > > > > > > Jon > > > > > > I'm so sorry you are having to give up doing what you love best, > > > being a bedside RN. We need RN's so badly too, especially ones > like > > > yourself who care so much. However, look at Beth - she still > > > uses all that knowledge for all of us now. > > > > > > Beth > > > > > > How's the Imuran working? I'm praying that you'll find that > you're > > > doing better & better as time goes on. > > > > > > All for now. > > > > > > Sherry > > > NSIP '98 Listed for Transplant 1.15.2009 > > > > > > No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.233 / Virus Database: 270.10.14/1920 - Release Date: 1/27/2009 6:15 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Joyce, They are cousins...Darah is Adam's daughter and Sara is 's daughter. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Joyce T Rosenberg wrote: linda i never remember if your grandaughters are sisters or cousins i think the answer is cousins, but just checking Pink Joyce IPF 3/06 Pennsylvania Donate Life I have been on Imuran since last June and never have any side effect, although people say they have noticed memory loss. By the way, I have been on Imuran since last June and never have had any side effects. (lol - just in case, that was a valiant attempt at humor on my part lol again.) On a more serious note, do not judge how these darn drugs work on me. I think that I have a cast iron stomach and stainless steel liver. No matter what I take, my liver enzymes are always quite low and my stomach never acts up. Of course, I wish the same could be said for my lungs, my spleen, my kidney, my joints and my bone marrow. (knock on wood, they have been behaving pretty well of late, except the joints) My doc did start me on a lower dose to make sure I could tolerate it and then tweaked it up to the 150mg I am on now. Maybe that makes a difference. Tom from PA AOSD 2003; Asthma 2006; NSIP 2008; Sjogrens 2008 > > > > > > Sherry, > > > It's only been a couple of days on the Imuran and so far all I > have > > is nausea. Not horrible...haven' t actually gotten sick just feel > > pretty lousy. The doctor told me I might have some nausea and to > call > > her if it lasts more than a few days or if I'm having trouble > keeping > > food down. > > > I just feel crummy and obviously don' t have any kind of appetite. > > I'm sure it will pass as my body adjusts. > > > So really just waiting and seeing. > > > > > > I'm thinking of you and hoping the phone rings at the perfect > > moment! > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: sherryjohnson16 <sherryjohnson16@ > > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, January 27, 2009 9:50:32 AM > > > Subject: Lung Transplant > > > > > > > > > I know a few people on this site already know about my decision > to > > go > > > ahead & get listed for a lung transplant at Vanderbilt in > > Nashville. > > > Now the wait starts. I'm just going to finish packing my > suitcase, > > > put it in the guest bedroom, & live for awhile. I'm so tired > right > > > now of seeing doctors, tests, etc. It's time for something else. > > > > > > I'm going to take a "page" out of Gwynne's e-mails & say a few > > words > > > to some of you. > > > > > > Lou > > > > > > Hooray! Let's hope you continue to get your energy back & lose > your > > > terrible shortness of breath. It could be a miracle in the works. > > > > > > Bruce > > > > > > You give such good advice about just living your life. When I was > > > asked during the lung transplant evaluation about what I couldn't > > do > > > any longer, I really had to think about it. I said, "Well, I've > > > tried to focus for so long now (11 yrs) on what I could do, I've > > > forgotten what I could NOT do anymore." That's how one should > > really > > > think all the time, regardless of illness as age poses the same > > > problems. > > > > > > Sher/Peggy > > > > > > Oh my, I've discovered that both of you are crafty people too. I > > > love to hand embroider doing pillowcases, tablecloths, dresser > > > scarfs, anything I can find. I also crochet & must get back to my > > > prayer shawl ministry for church. Also, I quilt - even finished > one > > > for my oldest granddaughter for Christmas. That was a challenge > in > > > my condition, but I hand quilted the whole twin size quilt. So, > > keep > > > our fingers from getting stiff, please God I pray! > > > > > > Jon > > > > > > I'm so sorry you are having to give up doing what you love best, > > > being a bedside RN. We need RN's so badly too, especially ones > like > > > yourself who care so much. However, look at Beth - she still > > > uses all that knowledge for all of us now. > > > > > > Beth > > > > > > How's the Imuran working? I'm praying that you'll find that > you're > > > doing better & better as time goes on. > > > > > > All for now. > > > > > > Sherry > > > NSIP '98 Listed for Transplant 1.15.2009 > > > > > > No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.233 / Virus Database: 270.10.14/1920 - Release Date: 1/27/2009 6:15 PM No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.233 / Virus Database: 270.10.15/1922 - Release Date: 1/28/2009 7:24 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Joyce, They are cousins...Darah is Adam's daughter and Sara is 's daughter. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Joyce T Rosenberg wrote: linda i never remember if your grandaughters are sisters or cousins i think the answer is cousins, but just checking Pink Joyce IPF 3/06 Pennsylvania Donate Life I have been on Imuran since last June and never have any side effect, although people say they have noticed memory loss. By the way, I have been on Imuran since last June and never have had any side effects. (lol - just in case, that was a valiant attempt at humor on my part lol again.) On a more serious note, do not judge how these darn drugs work on me. I think that I have a cast iron stomach and stainless steel liver. No matter what I take, my liver enzymes are always quite low and my stomach never acts up. Of course, I wish the same could be said for my lungs, my spleen, my kidney, my joints and my bone marrow. (knock on wood, they have been behaving pretty well of late, except the joints) My doc did start me on a lower dose to make sure I could tolerate it and then tweaked it up to the 150mg I am on now. Maybe that makes a difference. Tom from PA AOSD 2003; Asthma 2006; NSIP 2008; Sjogrens 2008 > > > > > > Sherry, > > > It's only been a couple of days on the Imuran and so far all I > have > > is nausea. Not horrible...haven' t actually gotten sick just feel > > pretty lousy. The doctor told me I might have some nausea and to > call > > her if it lasts more than a few days or if I'm having trouble > keeping > > food down. > > > I just feel crummy and obviously don' t have any kind of appetite. > > I'm sure it will pass as my body adjusts. > > > So really just waiting and seeing. > > > > > > I'm thinking of you and hoping the phone rings at the perfect > > moment! > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: sherryjohnson16 <sherryjohnson16@ > > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, January 27, 2009 9:50:32 AM > > > Subject: Lung Transplant > > > > > > > > > I know a few people on this site already know about my decision > to > > go > > > ahead & get listed for a lung transplant at Vanderbilt in > > Nashville. > > > Now the wait starts. I'm just going to finish packing my > suitcase, > > > put it in the guest bedroom, & live for awhile. I'm so tired > right > > > now of seeing doctors, tests, etc. It's time for something else. > > > > > > I'm going to take a "page" out of Gwynne's e-mails & say a few > > words > > > to some of you. > > > > > > Lou > > > > > > Hooray! Let's hope you continue to get your energy back & lose > your > > > terrible shortness of breath. It could be a miracle in the works. > > > > > > Bruce > > > > > > You give such good advice about just living your life. When I was > > > asked during the lung transplant evaluation about what I couldn't > > do > > > any longer, I really had to think about it. I said, "Well, I've > > > tried to focus for so long now (11 yrs) on what I could do, I've > > > forgotten what I could NOT do anymore." That's how one should > > really > > > think all the time, regardless of illness as age poses the same > > > problems. > > > > > > Sher/Peggy > > > > > > Oh my, I've discovered that both of you are crafty people too. I > > > love to hand embroider doing pillowcases, tablecloths, dresser > > > scarfs, anything I can find. I also crochet & must get back to my > > > prayer shawl ministry for church. Also, I quilt - even finished > one > > > for my oldest granddaughter for Christmas. That was a challenge > in > > > my condition, but I hand quilted the whole twin size quilt. So, > > keep > > > our fingers from getting stiff, please God I pray! > > > > > > Jon > > > > > > I'm so sorry you are having to give up doing what you love best, > > > being a bedside RN. We need RN's so badly too, especially ones > like > > > yourself who care so much. However, look at Beth - she still > > > uses all that knowledge for all of us now. > > > > > > Beth > > > > > > How's the Imuran working? I'm praying that you'll find that > you're > > > doing better & better as time goes on. > > > > > > All for now. > > > > > > Sherry > > > NSIP '98 Listed for Transplant 1.15.2009 > > > > > > No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.233 / Virus Database: 270.10.14/1920 - Release Date: 1/27/2009 6:15 PM No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.233 / Virus Database: 270.10.15/1922 - Release Date: 1/28/2009 7:24 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Joyce, They are cousins...Darah is Adam's daughter and Sara is 's daughter. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Joyce T Rosenberg wrote: linda i never remember if your grandaughters are sisters or cousins i think the answer is cousins, but just checking Pink Joyce IPF 3/06 Pennsylvania Donate Life I have been on Imuran since last June and never have any side effect, although people say they have noticed memory loss. By the way, I have been on Imuran since last June and never have had any side effects. (lol - just in case, that was a valiant attempt at humor on my part lol again.) On a more serious note, do not judge how these darn drugs work on me. I think that I have a cast iron stomach and stainless steel liver. No matter what I take, my liver enzymes are always quite low and my stomach never acts up. Of course, I wish the same could be said for my lungs, my spleen, my kidney, my joints and my bone marrow. (knock on wood, they have been behaving pretty well of late, except the joints) My doc did start me on a lower dose to make sure I could tolerate it and then tweaked it up to the 150mg I am on now. Maybe that makes a difference. Tom from PA AOSD 2003; Asthma 2006; NSIP 2008; Sjogrens 2008 > > > > > > Sherry, > > > It's only been a couple of days on the Imuran and so far all I > have > > is nausea. Not horrible...haven' t actually gotten sick just feel > > pretty lousy. The doctor told me I might have some nausea and to > call > > her if it lasts more than a few days or if I'm having trouble > keeping > > food down. > > > I just feel crummy and obviously don' t have any kind of appetite. > > I'm sure it will pass as my body adjusts. > > > So really just waiting and seeing. > > > > > > I'm thinking of you and hoping the phone rings at the perfect > > moment! > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: sherryjohnson16 <sherryjohnson16@ > > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, January 27, 2009 9:50:32 AM > > > Subject: Lung Transplant > > > > > > > > > I know a few people on this site already know about my decision > to > > go > > > ahead & get listed for a lung transplant at Vanderbilt in > > Nashville. > > > Now the wait starts. I'm just going to finish packing my > suitcase, > > > put it in the guest bedroom, & live for awhile. I'm so tired > right > > > now of seeing doctors, tests, etc. It's time for something else. > > > > > > I'm going to take a "page" out of Gwynne's e-mails & say a few > > words > > > to some of you. > > > > > > Lou > > > > > > Hooray! Let's hope you continue to get your energy back & lose > your > > > terrible shortness of breath. It could be a miracle in the works. > > > > > > Bruce > > > > > > You give such good advice about just living your life. When I was > > > asked during the lung transplant evaluation about what I couldn't > > do > > > any longer, I really had to think about it. I said, "Well, I've > > > tried to focus for so long now (11 yrs) on what I could do, I've > > > forgotten what I could NOT do anymore." That's how one should > > really > > > think all the time, regardless of illness as age poses the same > > > problems. > > > > > > Sher/Peggy > > > > > > Oh my, I've discovered that both of you are crafty people too. I > > > love to hand embroider doing pillowcases, tablecloths, dresser > > > scarfs, anything I can find. I also crochet & must get back to my > > > prayer shawl ministry for church. Also, I quilt - even finished > one > > > for my oldest granddaughter for Christmas. That was a challenge > in > > > my condition, but I hand quilted the whole twin size quilt. So, > > keep > > > our fingers from getting stiff, please God I pray! > > > > > > Jon > > > > > > I'm so sorry you are having to give up doing what you love best, > > > being a bedside RN. We need RN's so badly too, especially ones > like > > > yourself who care so much. However, look at Beth - she still > > > uses all that knowledge for all of us now. > > > > > > Beth > > > > > > How's the Imuran working? I'm praying that you'll find that > you're > > > doing better & better as time goes on. > > > > > > All for now. > > > > > > Sherry > > > NSIP '98 Listed for Transplant 1.15.2009 > > > > > > No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.233 / Virus Database: 270.10.14/1920 - Release Date: 1/27/2009 6:15 PM No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.233 / Virus Database: 270.10.15/1922 - Release Date: 1/28/2009 7:24 PM Quote Link to comment Share on other sites More sharing options...
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