Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Hi Cathie! A very warm welcome to the group. I am sorry your husband has IgAN though. I tried Cellcept for three months earlier this year. I am pretty far advanced with my renal disease and was down to 20% when I started the Cellcept. I am currently at 18% now. We have had some other members like Rita who have realized great success with Cellcept. I think it is key to start it earlier. It was probably too late for me when I tried it. As for how I felt on it, I did have some nausea on it, but after I followed 's advise and took it with food, I did much better. It does lower your immune system, but I did not get sick while I was on it. I was careful to avoid being around sick people and also was very diligent about washing my hands and I did just fine. I only stopped because it was not working for me. On your other question, I have heard about Dr. Appel, but have no personal experience so I will have to defer to others on that one. Welcome again! In a message dated 12/2/2004 10:42:38 AM Pacific Standard Time, cathieharmon@... writes: > > > > Hi I am new. My husband has IgA but I am not sure how bad it is. I > have many questions, really. > > How do I support him? > > He just went back on predisone, and they are now saying it isn't > working all that well. They want to put him on CellCept. I read the > drug description, but just wondered how do people feel on it? Do you > have to worry about infections and such since it supresses the immune > system? Also, does it work? > > We're thinking of going to meet with Dr. Appel in NYC - anyone here > ever consulted with him? > > Thank you so much in advance. I am sorry I am a bit ignorant and > can't give you any of his #'s and stuff. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 I have not done the fish oil myself, but you can read about it on our sister site at www.igan.ca. In a message dated 12/2/2004 1:43:11 PM Pacific Standard Time, cathieharmon@... writes: > > Have any of you had success with fish oil pills? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Thank you for the reply. He is early in the progression of the disease. Sorry to hear that the drug didn't work for you. Have any of you had success with fish oil pills? > Hi Cathie! > > A very warm welcome to the group. I am sorry your husband has IgAN though. > > I tried Cellcept for three months earlier this year. I am pretty far > advanced with my renal disease and was down to 20% when I started the Cellcept. I am > currently at 18% now. > > We have had some other members like Rita who have realized great success with > Cellcept. I think it is key to start it earlier. It was probably too late > for me when I tried it. > > As for how I felt on it, I did have some nausea on it, but after I followed > 's advise and took it with food, I did much better. It does lower your > immune system, but I did not get sick while I was on it. I was careful to avoid > being around sick people and also was very diligent about washing my hands and > I did just fine. I only stopped because it was not working for me. > > On your other question, I have heard about Dr. Appel, but have no personal > experience so I will have to defer to others on that one. > > Welcome again! > > > > In a message dated 12/2/2004 10:42:38 AM Pacific Standard Time, > cathieharmon@h... writes: > > > > > > > > > Hi I am new. My husband has IgA but I am not sure how bad it is. I > > have many questions, really. > > > > How do I support him? > > > > He just went back on predisone, and they are now saying it isn't > > working all that well. They want to put him on CellCept. I read the > > drug description, but just wondered how do people feel on it? Do you > > have to worry about infections and such since it supresses the immune > > system? Also, does it work? > > > > We're thinking of going to meet with Dr. Appel in NYC - anyone here > > ever consulted with him? > > > > Thank you so much in advance. I am sorry I am a bit ignorant and > > can't give you any of his #'s and stuff. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Welcome to the group, I'm glad you found us. I'm sorry to hear of your husbands diagnosis though. I'll have to defer your Cellcept question to those who have been or are on it. I've had good luck with prednisone so far and am in the midst of tapering off it. My labs have been slowly going back to my pre-pred days as I taper so we'll see where I end up from here. I've been taking fish oil since my diagnosis in Sept '03. It's hard to say if it's doing anything for me due to the prednisone I started on at the same time. My labs have bounced around a bit showing the best values about 6-8 months into the pred dosing...now with the exception of my proteinurea level they are where they were at diagnosis. My neph feels fish oil can't hurt and it might help so he has his patients take it. As for how to support your husband...I think the biggest thing is to realize that you both will go thru the stages of grief and you need to allow yourselves to do so. His walk thru the stages will be more pronounced as he is the one who has lost the promise of good health we all hope for throughout our lives. However you will find yourself running thru them too. My husband went thru the stages...mostly living in denial early on...until they stuck the IV in my hand and 3 days of high dose steroids left me looking like a walking corpse (ash gray with blue lips...I was a lovely sight) Then the pred side effects are hard to ignore so he went thru the whole bargaining " Are you sure she is as bad as all that? Could you be wrong? Isn't there more we could do? " , anger, despair, and slowly we are both finding acceptance. He accompanies me to my neph appointments which I find rather helpful. Many times as patients we are hit with so much info so fast that we don't catch it all, having someone else in the room helps quite a bit as they are just focused on listening rather than having all that " great now what is going to happen " stuff running thru their heads. We compare notes after my appointments and there is always something he picked up that I totally missed. I find the small things matter most. Like finding places we can eat out that fit within my diet and not mentioning the places we love that I can no longer eat at. Giving me a gentle push to get out and exercise regularly. He also lets me know when I'm going over the edge mentally and is always there to listen when I go thru my " I'm going to die " breakdowns. Basically keep doing what you've been doing to keep your marriage strong up to this point and you'll both make it thru this. Seeing you here, as with other spouses on this board, shows you are taking a hands on part in helping him cope with his disease. Welcome again, Amy G. CellCept success? Hi I am new. My husband has IgA but I am not sure how bad it is. I have many questions, really. How do I support him? He just went back on predisone, and they are now saying it isn't working all that well. They want to put him on CellCept. I read the drug description, but just wondered how do people feel on it? Do you have to worry about infections and such since it supresses the immune system? Also, does it work? We're thinking of going to meet with Dr. Appel in NYC - anyone here ever consulted with him? Thank you so much in advance. I am sorry I am a bit ignorant and can't give you any of his #'s and stuff. To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Wow, I am overwhelmed by all of the great responses! , Rita, Amy, and Bonnie thank you so much for replying. I will ask him to read all of this, as he is deciding whether or not to take the drug right now. Sounds really promising though. Amy, thanks for your comments on support. I am not the best with patients - squeemish and freaked out are my usual stances. I was also in DENIAL about this. He's had this the whole time we've been together (3 years) but I was just telling myself it was no big deal. I can't believe I did that! I am coming around to being more adult and trying to be more knowledgable now. (about time) I just kept thinking that the results of the prednisone would stick. , Bonnie & Rita, thanks for all the info on the side effects of CellCept. I'll get him to read all of it. SO much more helpful than RX descriptions. Thanks for emailing Ali about the doc. We're on hold as to whether we get in w/him. I want a 2nd opinion because his current neph has the worst bedside manner and withholds information - like lowering animal protein. He'd never mentioned that at all. Plus he tends to panic which is such a bad quality in a doctor, huh? Thanks again. Back to bed...I mean, off to work. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Wow, I am overwhelmed by all of the great responses! , Rita, Amy, and Bonnie thank you so much for replying. I will ask him to read all of this, as he is deciding whether or not to take the drug right now. Sounds really promising though. Amy, thanks for your comments on support. I am not the best with patients - squeemish and freaked out are my usual stances. I was also in DENIAL about this. He's had this the whole time we've been together (3 years) but I was just telling myself it was no big deal. I can't believe I did that! I am coming around to being more adult and trying to be more knowledgable now. (about time) I just kept thinking that the results of the prednisone would stick. , Bonnie & Rita, thanks for all the info on the side effects of CellCept. I'll get him to read all of it. SO much more helpful than RX descriptions. Thanks for emailing Ali about the doc. We're on hold as to whether we get in w/him. I want a 2nd opinion because his current neph has the worst bedside manner and withholds information - like lowering animal protein. He'd never mentioned that at all. Plus he tends to panic which is such a bad quality in a doctor, huh? Thanks again. Back to bed...I mean, off to work. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Wow, I am overwhelmed by all of the great responses! , Rita, Amy, and Bonnie thank you so much for replying. I will ask him to read all of this, as he is deciding whether or not to take the drug right now. Sounds really promising though. Amy, thanks for your comments on support. I am not the best with patients - squeemish and freaked out are my usual stances. I was also in DENIAL about this. He's had this the whole time we've been together (3 years) but I was just telling myself it was no big deal. I can't believe I did that! I am coming around to being more adult and trying to be more knowledgable now. (about time) I just kept thinking that the results of the prednisone would stick. , Bonnie & Rita, thanks for all the info on the side effects of CellCept. I'll get him to read all of it. SO much more helpful than RX descriptions. Thanks for emailing Ali about the doc. We're on hold as to whether we get in w/him. I want a 2nd opinion because his current neph has the worst bedside manner and withholds information - like lowering animal protein. He'd never mentioned that at all. Plus he tends to panic which is such a bad quality in a doctor, huh? Thanks again. Back to bed...I mean, off to work. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hi again Cathie (and Hubbie). You are very welcome. Glad we may be of some help. If you are interested in learning about some of the research going on about CellCept, the research study I'm involved you can " surf " there by going to http://www.mayo.edu then click on Learn about our Research, then click on clinical trial, then type in exactly IgA nephropathy Have fun learning.... There's lots of great references out there for IgA. Pierre " our founding father of this site " has given everyone access to several great references by going to our sister site listed as the highlighted web site below, and it's conveniently listed on all posts. http://www.igan.ca/id62.htm Bonnie stubborncathie wrote: Wow, I am overwhelmed by all of the great responses! , Rita, Amy, and Bonnie thank you so much for replying. I will ask him to read all of this, as he is deciding whether or not to take the drug right now. Sounds really promising though. Amy, thanks for your comments on support. I am not the best with patients - squeemish and freaked out are my usual stances. I was also in DENIAL about this. He's had this the whole time we've been together (3 years) but I was just telling myself it was no big deal. I can't believe I did that! I am coming around to being more adult and trying to be more knowledgable now. (about time) I just kept thinking that the results of the prednisone would stick. , Bonnie & Rita, thanks for all the info on the side effects of CellCept. I'll get him to read all of it. SO much more helpful than RX descriptions. Thanks for emailing Ali about the doc. We're on hold as to whether we get in w/him. I want a 2nd opinion because his current neph has the worst bedside manner and withholds information - like lowering animal protein. He'd never mentioned that at all. Plus he tends to panic which is such a bad quality in a doctor, huh? Thanks again. Back to bed...I mean, off to work. To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hi , I'm sorry you have reason to be here, but glad that you found your way here. I've heard GREAT stuff about Appel in NYC. He is one of the leading docs in MPGN - a rare kidney disease similar to IgAN. Most MPGN patients I know DREAM of seeing Appel. I've never met him personally, but if he's half as good as everyone says then you are in very, very good hands. My soon-to-be 14 year old son has been on Cellcept for about 18 months. Of all the drugs he takes, Cellcept is the easiest. Some folks complain about stomach problems, but that is something we have never experienced. Frequently, it's given with famotidine (aka Pepcid) to avoid stomach problems. Our experience with Cellcept has been very, very positive. It's generally considered a " second tier " immunosuppressant " , falling underneath drugs like cyclosporine - that have more serious side effects. Many folks I know have had very good experiences with Cellcept. As you have probably figured out, Cellcept works on the immune system. IL-2 (interleukin-2) is a protein that activates T-cells, and T-cells basically direct the immune response. The immune response is kind of like a snowball, in that one T-cell gets activated, produces IL-2, which activates other T-cells and makes them divide, and all these new cells produce IL-2, and...you get the idea. CellCept stops that cell division from happening. You asked how you can best support your husband. I come from the place of having lost my husband to cancer 12 years ago. I think the best you can do it keep on being a loving spouse and try not to get paralyzed by fear and not feel spot-welded to the idea that he's a kidney patient. I think all of us here would say our lives are bigger than that. . One of the good things about kidney disease is that it generally progresses slowly. There's enough time for you to wrap your mind around the changes. Congrats again on getting such a great neph! Feel free to jump into conversations here. Your two-cents are always appreciated! Cy CellCept success? > > > Hi I am new. My husband has IgA but I am not sure how bad it is. I > have many questions, really. > > How do I support him? > > He just went back on predisone, and they are now saying it isn't > working all that well. They want to put him on CellCept. I read the > drug description, but just wondered how do people feel on it? Do you > have to worry about infections and such since it supresses the immune > system? Also, does it work? > > We're thinking of going to meet with Dr. Appel in NYC - anyone here > ever consulted with him? > > Thank you so much in advance. I am sorry I am a bit ignorant and > can't give you any of his #'s and stuff. > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 I think the best you can do it keep on being a loving spouse and try not to get paralyzed by fear and not feel spot-welded to the idea that he's a kidney patient. I think all of us here would say our lives are bigger than that. . Hi Cy, The above words touched me, it made me rethink the way I handle pressure with regards to my husbands IgAN. Thanks for putting it so well Aruna --- Cy Webb wrote: > Hi , > > I'm sorry you have reason to be here, but glad that > you found your way here. > I've heard GREAT stuff about Appel in NYC. He is > one of the leading docs > in MPGN - a rare kidney disease similar to IgAN. > Most MPGN patients I know > DREAM of seeing Appel. I've never met him > personally, but if he's half as > good as everyone says then you are in very, very > good hands. > > My soon-to-be 14 year old son has been on Cellcept > for about 18 months. Of > all the drugs he takes, Cellcept is the easiest. > Some folks complain about > stomach problems, but that is something we have > never experienced. > Frequently, it's given with famotidine (aka Pepcid) > to avoid stomach > problems. Our experience with Cellcept has been > very, very positive. It's > generally considered a " second tier " > immunosuppressant " , falling underneath > drugs like cyclosporine - that have more serious > side effects. Many folks I > know have had very good experiences with Cellcept. > > As you have probably figured out, Cellcept works on > the immune system. IL-2 > (interleukin-2) is a protein that activates T-cells, > and T-cells > basically direct the immune response. The immune > response is kind of like a > snowball, in that one T-cell gets activated, > produces IL-2, which activates > other T-cells and makes them divide, and all these > new cells produce IL-2, > and...you get the idea. CellCept stops that cell > division from happening. > > You asked how you can best support your husband. I > come from the place of > having lost my husband to cancer 12 years ago. I > think the best you can do > it keep on being a loving spouse and try not to get > paralyzed by fear and > not feel spot-welded to the idea that he's a kidney > patient. I think all of > us here would say our lives are bigger than that. . > One of the good things > about kidney disease is that it generally progresses > slowly. There's enough > time for you to wrap your mind around the changes. > > Congrats again on getting such a great neph! Feel > free to jump into > conversations here. Your two-cents are always > appreciated! > Cy > > > > > > > CellCept success? > > > > > > > > Hi I am new. My husband has IgA but I am not sure > how bad it is. I > > have many questions, really. > > > > How do I support him? > > > > He just went back on predisone, and they are now > saying it isn't > > working all that well. They want to put him on > CellCept. I read the > > drug description, but just wondered how do people > feel on it? Do you > > have to worry about infections and such since it > supresses the immune > > system? Also, does it work? > > > > We're thinking of going to meet with Dr. Appel in > NYC - anyone here > > ever consulted with him? > > > > Thank you so much in advance. I am sorry I am a > bit ignorant and > > can't give you any of his #'s and stuff. > > > > > > > > > > > > > > To edit your settings for the group, go to our > Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > To unsubcribe via email, > > iga-nephropathy-unsubscribe > > Visit our companion website at www.igan.ca. The > site is entirely supported > by donations. If you would like to help, go to: > > http://www.igan.ca/id62.htm > > > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Thanks Aruna. Cy prm wrote: I think the best you can do it keep on being a loving spouse and try not to get paralyzed by fear and not feel spot-welded to the idea that he's a kidney patient. I think all of us here would say our lives are bigger than that. . Hi Cy, The above words touched me, it made me rethink the way I handle pressure with regards to my husbands IgAN. Thanks for putting it so well Aruna --- Cy Webb wrote: > Hi , > > I'm sorry you have reason to be here, but glad that > you found your way here. > I've heard GREAT stuff about Appel in NYC. He is > one of the leading docs > in MPGN - a rare kidney disease similar to IgAN. > Most MPGN patients I know > DREAM of seeing Appel. I've never met him > personally, but if he's half as > good as everyone says then you are in very, very > good hands. > > My soon-to-be 14 year old son has been on Cellcept > for about 18 months. Of > all the drugs he takes, Cellcept is the easiest. > Some folks complain about > stomach problems, but that is something we have > never experienced. > Frequently, it's given with famotidine (aka Pepcid) > to avoid stomach > problems. Our experience with Cellcept has been > very, very positive. It's > generally considered a " second tier " > immunosuppressant " , falling underneath > drugs like cyclosporine - that have more serious > side effects. Many folks I > know have had very good experiences with Cellcept. > > As you have probably figured out, Cellcept works on > the immune system. IL-2 > (interleukin-2) is a protein that activates T-cells, > and T-cells > basically direct the immune response. The immune > response is kind of like a > snowball, in that one T-cell gets activated, > produces IL-2, which activates > other T-cells and makes them divide, and all these > new cells produce IL-2, > and...you get the idea. CellCept stops that cell > division from happening. > > You asked how you can best support your husband. I > come from the place of > having lost my husband to cancer 12 years ago. I > think the best you can do > it keep on being a loving spouse and try not to get > paralyzed by fear and > not feel spot-welded to the idea that he's a kidney > patient. I think all of > us here would say our lives are bigger than that. . > One of the good things > about kidney disease is that it generally progresses > slowly. There's enough > time for you to wrap your mind around the changes. > > Congrats again on getting such a great neph! Feel > free to jump into > conversations here. Your two-cents are always > appreciated! > Cy > > > > > > > CellCept success? > > > > > > > > Hi I am new. My husband has IgA but I am not sure > how bad it is. I > > have many questions, really. > > > > How do I support him? > > > > He just went back on predisone, and they are now > saying it isn't > > working all that well. They want to put him on > CellCept. I read the > > drug description, but just wondered how do people > feel on it? Do you > > have to worry about infections and such since it > supresses the immune > > system? Also, does it work? > > > > We're thinking of going to meet with Dr. Appel in > NYC - anyone here > > ever consulted with him? > > > > Thank you so much in advance. I am sorry I am a > bit ignorant and > > can't give you any of his #'s and stuff. > > > > > > > > > > > > > > To edit your settings for the group, go to our > Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > To unsubcribe via email, > > iga-nephropathy-unsubscribe > > Visit our companion website at www.igan.ca. The > site is entirely supported > by donations. If you would like to help, go to: > > http://www.igan.ca/id62.htm > > > > Thank you > > Quote Link to comment Share on other sites More sharing options...
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