Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Hi , Well, I know I usually say that, but that's when people are talking about 10ths :-) Going from 5 to 2 is certainly cause to celebrate. That's great news. Pierre Test Results > > > I know Pierre tells us not to dwell on our test results, but I > received mine yesterday and just had to share. My creatnine is down > to 2.1! (Started at 5.2 at diagnosis in May 2004) I just had my > third Cytoxan treatment last week and three more to go. Knocked me > down for a few days, but if my function contiues to improve, I'm > willing to endure. > > Thanks for listening. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Wow !!! That is remarkable!!! I am rejoicing with you on that great news. Congratulations. Maybe I should try Cytoxan as one last ditch effort ;-) In a message dated 10/29/2004 6:25:01 AM Pacific Daylight Time, arjessup@... writes: > > I know Pierre tells us not to dwell on our test results, but I > received mine yesterday and just had to share. My creatnine is down > to 2.1! (Started at 5.2 at diagnosis in May 2004) I just had my > third Cytoxan treatment last week and three more to go. Knocked me > down for a few days, but if my function contiues to improve, I'm > willing to endure. > > Thanks for listening. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2004 Report Share Posted October 30, 2004 Hi , I had to read your post several times. Man oh man that is totally awesome news. I am sooooo glad you are doing well with the cytoxan. Keep up the GREAT work. Hope you haven't had any side effects to speak of. Take good care, I just had to tell you how great I think your doing with the Cytoxan. Bonnie keyofa1 wrote: I know Pierre tells us not to dwell on our test results, but I received mine yesterday and just had to share. My creatnine is down to 2.1! (Started at 5.2 at diagnosis in May 2004) I just had my third Cytoxan treatment last week and three more to go. Knocked me down for a few days, but if my function contiues to improve, I'm willing to endure. Thanks for listening. 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 November 1, 2004 Report Share Posted November 1, 2004 So far the only side effect I have had is that my hair is beginning to thin (hoping and praying it doesn't all fall out), as this is a type of chemo treatment. Also, with the drop in creatnine, my neph let me start weaning my prednisone. The prednisone seemed to be helping with the nephrotic (sp?) syndrome I am in, but is not helping with proteinuria. So, with the weakness I am experiencing with the prednisone, she let me start the taper. No complaints here. Can't wait to see what a " normal " size face looks like! - > I know Pierre tells us not to dwell on our test results, but I > received mine yesterday and just had to share. My creatnine is down > to 2.1! (Started at 5.2 at diagnosis in May 2004) I just had my > third Cytoxan treatment last week and three more to go. Knocked me > down for a few days, but if my function contiues to improve, I'm > willing to endure. > > Thanks for listening. > > > > > > > > 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 November 1, 2004 Report Share Posted November 1, 2004 Hi , Great news that you get to start your taper! Be prepared for your body to respond to the reduced dosage. I was not on Pred long enough to have all the side effects, but I think others have said the puffy face goes away around 5 to 10 mg/day I think. My memory has not been too terrific lately, so that may be wrong. If anyone else can jump in and correct me if I am wrong on this one, please do. In any case, going down on the Prednisone is a good thing! In a message dated 11/1/2004 6:15:38 AM Pacific Standard Time, arjessup@... writes: > she let me start the taper. No complaints here. Can't > wait to see what a " normal " size face looks like! > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 Congrats on the prednisone taper and on the awesome lab results!! Cytoxan seems to be doing it's thing for you for sure. ) My hair has been falling out in handfuls since I started on the pred. I hope as you taper yours will start to grow back in...though the cytoxan can cause the same sort of problem. So far mine has just thinned quite a bit. Your normal face starts to reappear around 10-5mg of the pred. I had my face back on 5mg daily...now that I'm back up to 10mg daily I have a bit of puffiness, but nothing near the moon face I had on the higher doses. Hang in there and be prepared for the shakes, munchies, and being really tired as your pred dose comes down. I get about 3 days worth of shakes and increased hunger with each taper. Amy G. Re: Test Results > > > So far the only side effect I have had is that my hair is beginning > to thin (hoping and praying it doesn't all fall out), as this is a > type of chemo treatment. Also, with the drop in creatnine, my neph > let me start weaning my prednisone. The prednisone seemed to be > helping with the nephrotic (sp?) syndrome I am in, but is not helping > with proteinuria. So, with the weakness I am experiencing with the > prednisone, she let me start the taper. No complaints here. Can't > wait to see what a " normal " size face looks like! > > - > > > > > I know Pierre tells us not to dwell on our test results, but I > > received mine yesterday and just had to share. My creatnine is > down > > to 2.1! (Started at 5.2 at diagnosis in May 2004) I just had my > > third Cytoxan treatment last week and three more to go. Knocked me > > down for a few days, but if my function contiues to improve, I'm > > willing to endure. > > > > Thanks for listening. > > > > > > > > > > > > > > > > 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 November 2, 2004 Report Share Posted November 2, 2004 Amy Thanks for replying on the Prednisone taper. I was actually expecting the opposite, but am having the effects you listed. Thought there may be something wrong, but glad to know it's just part of the course. The biggest thing I want is to regain the strength in my legs. I'm still having a lot of problems climbing stairs and even stepping up on a sidewalk and it's starting to concern me. Here's looking to 5mg/day, maybe it will be my Christmas present! > > > I know Pierre tells us not to dwell on our test results, but I > > > received mine yesterday and just had to share. My creatnine is > > down > > > to 2.1! (Started at 5.2 at diagnosis in May 2004) I just had my > > > third Cytoxan treatment last week and three more to go. Knocked me > > > down for a few days, but if my function contiues to improve, I'm > > > willing to endure. > > > > > > Thanks for listening. > > > > > > > > > > > > > > > > > > > > > > > > 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 November 3, 2004 Report Share Posted November 3, 2004 Hi Billie How are your labs doing now that you are on your taper? I hope you are getting good benefit from the meds. In a message dated 11/3/2004 11:21:30 AM Pacific Standard Time, vintagecrazy2003@... writes: > Hi , So happy to hear that you have had great results with the > Cytoxan-I also did and now I am on Imuran and still on the prednisone at 10mg. > past two weeks-I like you can't wait to have a " normal face " . I didn't loose all > my hair-just really thinned on the Cytoxan and I already had thin hair. I > thought the puffy face thing wouldn't bother me but it sure has as there just > isn't anyway to hide it. But in the long run I know we must take the > prednisone as it does appear to help with the inflammtion. Happy to hear you are so > much better in your labs. I only get to the library to check the mail every so > often so I will email when I can. Best to you . Billie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2004 Report Share Posted November 3, 2004 J, My son was on Cytoxan once a month (by IV) from last May to November. He had a recurrence of IgAN after his transplant and went rather rapidly into nephrotic syndrome. It was connected to a toxic build-up of Prograf (an immunosuppresant) in his new kidney. Anyway, because the IgAN appeared to be much more aggressive the 2nd time around, Cytoxan was recommended, and it worked very well for him. Proteinuria dropped dramatically and creatinine level came down as well. Labs have remained stable since he stopped the Cytoxan treatments. His neph, who initially thought there was a good chance he would lose the new kidney, is very pleased with how well the Cytoxan worked for him. Good luck - Betsy > > Hi Billie: > > When did you finish your Cytoxan treatments? Did you do the IV or > pill form? I'm currently on the IV and take 1 treatment a month and > will finish up in January. I'm just curious to see how anyone is > doing a few months, or even a year, after finishing . This doesn't > seem to be a very common treatment, but with the agressiveness of my > IgAN, we didn't have a lot of choice as the prednisone was not > helping very much. My protein has not been under control since > diagnosis in May (stayed at 3+), but they are more concerned about > getting my function back at this time. Then she said we would work > on adjusting my BP meds and going to an ACE, but she won't do this > while we are treating the nephrotic syndrome. > > J. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2004 Report Share Posted November 3, 2004 Just to clarify, he was on Cytoxan in 2003, so he's been off it for a year now. Betsy > J, > My son was on Cytoxan once a month (by IV) from last May to November. > He had a recurrence of IgAN after his transplant and went rather > rapidly into nephrotic syndrome. It was connected to a toxic build-up > of Prograf (an immunosuppresant) in his new kidney. Anyway, because > the > IgAN appeared to be much more aggressive the 2nd time around, Cytoxan > was recommended, and it worked very well for him. Proteinuria dropped > dramatically and creatinine level came down as well. Labs have > remained > stable since he stopped the Cytoxan treatments. His neph, who > initially > thought there was a good chance he would lose the new kidney, is very > pleased with how well the Cytoxan worked for him. > > Good luck - > Betsy > Quote Link to comment Share on other sites More sharing options...
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