Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Hi Bonnie, A very warm welcome to you! I am glad you found this group. There are a couple of us who have done Cellcept. I just got off of it after a three month try. Unfortunately, it did not work for me, but Rita is having more success with it than I did. Please keep us informed on how it is going for you. Do you know what dose of Cellcept you will be on? I really pray you will get good results. Welcome again Bonnie, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Hi Bonnie, A very warm welcome to you! I am glad you found this group. There are a couple of us who have done Cellcept. I just got off of it after a three month try. Unfortunately, it did not work for me, but Rita is having more success with it than I did. Please keep us informed on how it is going for you. Do you know what dose of Cellcept you will be on? I really pray you will get good results. Welcome again Bonnie, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 my Neph used the Mayo clinic research to make up the treatment plan, but I was not an official part of the study. I had severe problems with nausea on the higher dose, and it was still a problem, although less of a problem, on the lower dose. I stayed on the higher dose for a month and a half, then the lower dose the second month and a half. My anemia also got worse on the Cellcept leaving me feeling pretty wiped out. Exercise was SO hard, harder than it has been all these years with IgAN. I hesitate to tell you all this because I don't want to discourage you from something that may work well for you, but it is the honest truth since you asked. About all I could do was get through work every day, but I persevered and made it through. It had been helping me, I would have continued on it beyond the three months (which just ended June 2nd), but since my creatinine was just rising, it was not worth the side effects to stay on it. I really hope it helps you though! I just seem to be very sensitive to side effects of medications. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Hi Bonnie, Welcome to the group, I'm happy you found us. I don't know anything about the Mayo Clinic study but good luck with getting into it. I know studies like that can help many once completed. Welcome again! Amy New to you > Hello everyone, I was recently diagnosed with Ig A. Am now doing quite well. Creat. and protein stable as well as B/P (finally). Was wondering if anyone out there is enrolled in the Ig A study with Cellcept through Mayo Clinic etc. If so, how are things going? I am in the preliminary phase currently. Will change from my usual dose of Altace (20mg/day) to Lisinopril (uncertain dose) within the week. Then continue on for 3 months and if proteinuria goes down enough (<0.6 grams/24 hours) will stay on that regime (with Avapro, HCTZ, and 12.5 grams of fish oil/day. I don't look forward to changing to Lisinopril because I am doing so well on Altace, but that is part of the study protocol. Please give me a holler if you have been involved with the study, or know anyone who is participating. Thanks! Anyother words of wisdom would be helpful as well. Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Hi Bonnie, Welcome to the group, I'm happy you found us. I don't know anything about the Mayo Clinic study but good luck with getting into it. I know studies like that can help many once completed. Welcome again! Amy New to you > Hello everyone, I was recently diagnosed with Ig A. Am now doing quite well. Creat. and protein stable as well as B/P (finally). Was wondering if anyone out there is enrolled in the Ig A study with Cellcept through Mayo Clinic etc. If so, how are things going? I am in the preliminary phase currently. Will change from my usual dose of Altace (20mg/day) to Lisinopril (uncertain dose) within the week. Then continue on for 3 months and if proteinuria goes down enough (<0.6 grams/24 hours) will stay on that regime (with Avapro, HCTZ, and 12.5 grams of fish oil/day. I don't look forward to changing to Lisinopril because I am doing so well on Altace, but that is part of the study protocol. Please give me a holler if you have been involved with the study, or know anyone who is participating. Thanks! Anyother words of wisdom would be helpful as well. Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Hi Bonnie, Welcome to the group, I'm happy you found us. I don't know anything about the Mayo Clinic study but good luck with getting into it. I know studies like that can help many once completed. Welcome again! Amy New to you > Hello everyone, I was recently diagnosed with Ig A. Am now doing quite well. Creat. and protein stable as well as B/P (finally). Was wondering if anyone out there is enrolled in the Ig A study with Cellcept through Mayo Clinic etc. If so, how are things going? I am in the preliminary phase currently. Will change from my usual dose of Altace (20mg/day) to Lisinopril (uncertain dose) within the week. Then continue on for 3 months and if proteinuria goes down enough (<0.6 grams/24 hours) will stay on that regime (with Avapro, HCTZ, and 12.5 grams of fish oil/day. I don't look forward to changing to Lisinopril because I am doing so well on Altace, but that is part of the study protocol. Please give me a holler if you have been involved with the study, or know anyone who is participating. Thanks! Anyother words of wisdom would be helpful as well. Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 , thanks for your very quick response. I'm curious what type of problems did you have with the Cellcept? Was it associated with the Mayo study, or did your nephrol. prescribe it? Thanks Bonnie W4JC@... wrote:Hi Bonnie, A very warm welcome to you! I am glad you found this group. There are a couple of us who have done Cellcept. I just got off of it after a three month try. Unfortunately, it did not work for me, but Rita is having more success with it than I did. Please keep us informed on how it is going for you. Do you know what dose of Cellcept you will be on? I really pray you will get good results. Welcome again Bonnie, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 , thanks for your very quick response. I'm curious what type of problems did you have with the Cellcept? Was it associated with the Mayo study, or did your nephrol. prescribe it? Thanks Bonnie W4JC@... wrote:Hi Bonnie, A very warm welcome to you! I am glad you found this group. There are a couple of us who have done Cellcept. I just got off of it after a three month try. Unfortunately, it did not work for me, but Rita is having more success with it than I did. Please keep us informed on how it is going for you. Do you know what dose of Cellcept you will be on? I really pray you will get good results. Welcome again Bonnie, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 , thanks for your very quick response. I'm curious what type of problems did you have with the Cellcept? Was it associated with the Mayo study, or did your nephrol. prescribe it? Thanks Bonnie W4JC@... wrote:Hi Bonnie, A very warm welcome to you! I am glad you found this group. There are a couple of us who have done Cellcept. I just got off of it after a three month try. Unfortunately, it did not work for me, but Rita is having more success with it than I did. Please keep us informed on how it is going for you. Do you know what dose of Cellcept you will be on? I really pray you will get good results. Welcome again Bonnie, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Welcome to the group. I hope you find it as comforting as I do to have such a wonderful group of people supporting you. I am not on a " study " but I have been taking Cyclosporine, which I think is the same as cellcept? I have been on it for 4 months. I have very high proteinuria 6000+ and so far it hasn't seemed to work for me. I hope you have better success. Jill > Hello everyone, I was recently diagnosed with Ig A. Am now doing quite well. Creat. and protein stable as well as B/P (finally). Was wondering if anyone out there is enrolled in the Ig A study with Cellcept through Mayo Clinic etc. If so, how are things going? I am in the preliminary phase currently. Will change from my usual dose of Altace (20mg/day) to Lisinopril (uncertain dose) within the week. Then continue on for 3 months and if proteinuria goes down enough (<0.6 grams/24 hours) will stay on that regime (with Avapro, HCTZ, and 12.5 grams of fish oil/day. I don't look forward to changing to Lisinopril because I am doing so well on Altace, but that is part of the study protocol. Please give me a holler if you have been involved with the study, or know anyone who is participating. Thanks! Anyother words of wisdom would be helpful as well. Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Oops, my bad, I thought they were the same, it sounded familiar to me for some reason. Sorry for the confusion! > Hi Jill, > > Cyclosporin and Cellcept are two different drugs. I have not ever been on > Cyclosporin though and don't know too much about it. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Oops, my bad, I thought they were the same, it sounded familiar to me for some reason. Sorry for the confusion! > Hi Jill, > > Cyclosporin and Cellcept are two different drugs. I have not ever been on > Cyclosporin though and don't know too much about it. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Oops, my bad, I thought they were the same, it sounded familiar to me for some reason. Sorry for the confusion! > Hi Jill, > > Cyclosporin and Cellcept are two different drugs. I have not ever been on > Cyclosporin though and don't know too much about it. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Bonnie, Just curious - who is your neph. in Colorado? Betsy > Hi Rita, Thank you for your quick response. I am beginning to love > this site more and more every day. To access information at Mayo: > www.mayoclinic.org  then go to Rochester, then Clinical Trials, then > Kidney and Urology. There's a lot more information within this site. > Kinda fun to " tour " around and see what's happening in the world of > nephrology as well as research. Mayo at Rochester has 37 > nephrologists, and I absolutely think my Neph is great (Dr. > Fernenza). I am so grateful to be referred to the " best in the > world. "  (Although I really believe my Neph in Colorado is the best in > the area as well) I have been to Mayo 3 times in the past 5 weeks, > but don't have to go back for a month now. Hope to hear from you > periodically. Thanks again for responding, especially so quickly. > Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Bonnie, Just curious - who is your neph. in Colorado? Betsy > Hi Rita, Thank you for your quick response. I am beginning to love > this site more and more every day. To access information at Mayo: > www.mayoclinic.org  then go to Rochester, then Clinical Trials, then > Kidney and Urology. There's a lot more information within this site. > Kinda fun to " tour " around and see what's happening in the world of > nephrology as well as research. Mayo at Rochester has 37 > nephrologists, and I absolutely think my Neph is great (Dr. > Fernenza). I am so grateful to be referred to the " best in the > world. "  (Although I really believe my Neph in Colorado is the best in > the area as well) I have been to Mayo 3 times in the past 5 weeks, > but don't have to go back for a month now. Hope to hear from you > periodically. Thanks again for responding, especially so quickly. > Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Bonnie, Just curious - who is your neph. in Colorado? Betsy > Hi Rita, Thank you for your quick response. I am beginning to love > this site more and more every day. To access information at Mayo: > www.mayoclinic.org  then go to Rochester, then Clinical Trials, then > Kidney and Urology. There's a lot more information within this site. > Kinda fun to " tour " around and see what's happening in the world of > nephrology as well as research. Mayo at Rochester has 37 > nephrologists, and I absolutely think my Neph is great (Dr. > Fernenza). I am so grateful to be referred to the " best in the > world. "  (Although I really believe my Neph in Colorado is the best in > the area as well) I have been to Mayo 3 times in the past 5 weeks, > but don't have to go back for a month now. Hope to hear from you > periodically. Thanks again for responding, especially so quickly. > Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Betsy, I have Dr. Harberts, and Dr. Stanley Sicher. Are you from Colorado too? Betsy Cabell wrote:Bonnie, Just curious - who is your neph. in Colorado? Betsy > Hi Rita, Thank you for your quick response. I am beginning to love > this site more and more every day. To access information at Mayo: > www.mayoclinic.org then go to Rochester, then Clinical Trials, then > Kidney and Urology. There's a lot more information within this site.. > Kinda fun to " tour " around and see what's happening in the world of > nephrology as well as research. Mayo at Rochester has 37 > nephrologists, and I absolutely think my Neph is great (Dr. > Fernenza). I am so grateful to be referred to the " best in the > world. " (Although I really believe my Neph in Colorado is the best in > the area as well) I have been to Mayo 3 times in the past 5 weeks, > but don't have to go back for a month now. Hope to hear from you > periodically. Thanks again for responding, especially so quickly. > Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I feel silly, in that I spelled Dr. Fervenza's name incorrectly below. Sorry to all. Big OOPS, I get thinking and typing and make mistakes and forget to spell check. Bonnie Betsy Cabell wrote:Bonnie, Just curious - who is your neph. in Colorado? Betsy > Hi Rita, Thank you for your quick response. I am beginning to love > this site more and more every day. To access information at Mayo: > www.mayoclinic.org then go to Rochester, then Clinical Trials, then > Kidney and Urology. There's a lot more information within this site.. > Kinda fun to " tour " around and see what's happening in the world of > nephrology as well as research. Mayo at Rochester has 37 > nephrologists, and I absolutely think my Neph is great (Dr. > Fernenza). I am so grateful to be referred to the " best in the > world. " (Although I really believe my Neph in Colorado is the best in > the area as well) I have been to Mayo 3 times in the past 5 weeks, > but don't have to go back for a month now. Hope to hear from you > periodically. Thanks again for responding, especially so quickly. > Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I feel silly, in that I spelled Dr. Fervenza's name incorrectly below. Sorry to all. Big OOPS, I get thinking and typing and make mistakes and forget to spell check. Bonnie Betsy Cabell wrote:Bonnie, Just curious - who is your neph. in Colorado? Betsy > Hi Rita, Thank you for your quick response. I am beginning to love > this site more and more every day. To access information at Mayo: > www.mayoclinic.org then go to Rochester, then Clinical Trials, then > Kidney and Urology. There's a lot more information within this site.. > Kinda fun to " tour " around and see what's happening in the world of > nephrology as well as research. Mayo at Rochester has 37 > nephrologists, and I absolutely think my Neph is great (Dr. > Fernenza). I am so grateful to be referred to the " best in the > world. " (Although I really believe my Neph in Colorado is the best in > the area as well) I have been to Mayo 3 times in the past 5 weeks, > but don't have to go back for a month now. Hope to hear from you > periodically. Thanks again for responding, especially so quickly. > Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I feel silly, in that I spelled Dr. Fervenza's name incorrectly below. Sorry to all. Big OOPS, I get thinking and typing and make mistakes and forget to spell check. Bonnie Betsy Cabell wrote:Bonnie, Just curious - who is your neph. in Colorado? Betsy > Hi Rita, Thank you for your quick response. I am beginning to love > this site more and more every day. To access information at Mayo: > www.mayoclinic.org then go to Rochester, then Clinical Trials, then > Kidney and Urology. There's a lot more information within this site.. > Kinda fun to " tour " around and see what's happening in the world of > nephrology as well as research. Mayo at Rochester has 37 > nephrologists, and I absolutely think my Neph is great (Dr. > Fernenza). I am so grateful to be referred to the " best in the > world. " (Although I really believe my Neph in Colorado is the best in > the area as well) I have been to Mayo 3 times in the past 5 weeks, > but don't have to go back for a month now. Hope to hear from you > periodically. Thanks again for responding, especially so quickly. > Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hey Bonnie I'm in Colorado too, just East of Colorado Springs. ) I see Dr. Brad Yuan, great guy and great with my kids which is a big plus for me. I love his support staff too. If there is one thing that will turn me off of a good doctor it's a rude or insensitive support staff. Amy Re: New to you > Betsy, I have Dr. Harberts, and Dr. Stanley Sicher. Are you from Colorado too? > > Betsy Cabell wrote:Bonnie, > Just curious - who is your neph. in Colorado? > > Betsy > > > > > Hi Rita, Thank you for your quick response. I am beginning to love > > this site more and more every day. To access information at Mayo: > > www.mayoclinic.org then go to Rochester, then Clinical Trials, then > > Kidney and Urology. There's a lot more information within this site.. > > Kinda fun to " tour " around and see what's happening in the world of > > nephrology as well as research. Mayo at Rochester has 37 > > nephrologists, and I absolutely think my Neph is great (Dr. > > Fernenza). I am so grateful to be referred to the " best in the > > world. " (Although I really believe my Neph in Colorado is the best in > > the area as well) I have been to Mayo 3 times in the past 5 weeks, > > but don't have to go back for a month now. Hope to hear from you > > periodically. Thanks again for responding, especially so quickly. > > Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hey Bonnie I'm in Colorado too, just East of Colorado Springs. ) I see Dr. Brad Yuan, great guy and great with my kids which is a big plus for me. I love his support staff too. If there is one thing that will turn me off of a good doctor it's a rude or insensitive support staff. Amy Re: New to you > Betsy, I have Dr. Harberts, and Dr. Stanley Sicher. Are you from Colorado too? > > Betsy Cabell wrote:Bonnie, > Just curious - who is your neph. in Colorado? > > Betsy > > > > > Hi Rita, Thank you for your quick response. I am beginning to love > > this site more and more every day. To access information at Mayo: > > www.mayoclinic.org then go to Rochester, then Clinical Trials, then > > Kidney and Urology. There's a lot more information within this site.. > > Kinda fun to " tour " around and see what's happening in the world of > > nephrology as well as research. Mayo at Rochester has 37 > > nephrologists, and I absolutely think my Neph is great (Dr. > > Fernenza). I am so grateful to be referred to the " best in the > > world. " (Although I really believe my Neph in Colorado is the best in > > the area as well) I have been to Mayo 3 times in the past 5 weeks, > > but don't have to go back for a month now. Hope to hear from you > > periodically. Thanks again for responding, especially so quickly. > > Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hey Bonnie I'm in Colorado too, just East of Colorado Springs. ) I see Dr. Brad Yuan, great guy and great with my kids which is a big plus for me. I love his support staff too. If there is one thing that will turn me off of a good doctor it's a rude or insensitive support staff. Amy Re: New to you > Betsy, I have Dr. Harberts, and Dr. Stanley Sicher. Are you from Colorado too? > > Betsy Cabell wrote:Bonnie, > Just curious - who is your neph. in Colorado? > > Betsy > > > > > Hi Rita, Thank you for your quick response. I am beginning to love > > this site more and more every day. To access information at Mayo: > > www.mayoclinic.org then go to Rochester, then Clinical Trials, then > > Kidney and Urology. There's a lot more information within this site.. > > Kinda fun to " tour " around and see what's happening in the world of > > nephrology as well as research. Mayo at Rochester has 37 > > nephrologists, and I absolutely think my Neph is great (Dr. > > Fernenza). I am so grateful to be referred to the " best in the > > world. " (Although I really believe my Neph in Colorado is the best in > > the area as well) I have been to Mayo 3 times in the past 5 weeks, > > but don't have to go back for a month now. Hope to hear from you > > periodically. Thanks again for responding, especially so quickly. > > Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 We are in the Denver area (Centennial). My son has IgAN and goes to the Renal Transplant Clinic at University Hospital. Where are you located? Amy is just east of Colorado Springs. Betsy > Betsy, I have Dr. Harberts, and Dr. Stanley Sicher. Are you > from Colorado too? > > Betsy Cabell wrote:Bonnie, > Just curious - who is your neph. in Colorado? > > Betsy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 We are in the Denver area (Centennial). My son has IgAN and goes to the Renal Transplant Clinic at University Hospital. Where are you located? Amy is just east of Colorado Springs. Betsy > Betsy, I have Dr. Harberts, and Dr. Stanley Sicher. Are you > from Colorado too? > > Betsy Cabell wrote:Bonnie, > Just curious - who is your neph. in Colorado? > > Betsy > Quote Link to comment Share on other sites More sharing options...
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