Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 Wow Cy! You wowed me with that explanation! Thanks for the details. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 Hi , I am sorry your creatinine has gone up. That is always hard to hear. I wish you could have gotten the same kind of news as Marie. I think that is about 2.73 mg/dl in US units. That is about where I am too. Sorry you didn't get better news, but at least the progression is slower. I guess we have to count all our blessings! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 Well Cy, what ever the source, you did a A+ job presenting it in a way that was understandable! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 , Sorry to hear about your creatinine levels. Feh!, Yuck! Evil! Your are right that cellcept = MMF (mycophenolate mofetil. My son has been taking MMF for about 1.5 months. No side effects yet. He's had a generally good response, but he's on so many drugs that I can't say that it's the cellcept that's causing it. Only problem is in maintaining a high enough trough level. At Stanford, MMF is commonly used for transplants and for lupus nephritis. Many people, however, consider it a " second tier drug " (at least with respect to transplants) following behind cyclosporine and prograf at least because it has a much shorter track record. A doc there explained that with lupus, MMF is very good is sustaining a remission that is induced with other drugs MMF acts by inhibiting division of T cells. I recently received a letter from a doc that explained the mechanism of action for various drugs (including MMF) as follows. :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. So, that's the background for the one-sentence answer: Prograf stops IL-2 from being produced when the T-cell receptor is activated, and rapamycin stops T-cells from responding to IL-2 from their IL-2 receptors. So these two drugs act on different steps of T-cell activation. Activation through the IL-2 receptor directly stimulates division, and drugs like CellCept stop cell division, so these work from that end--a little further down the line than rapa. I'm surprised however, that they would consider putting you on it if you are facing dialysis. With MPGN patients, that's the time they take patients off of it. I hope your next visit is better. Good luck! Let me know if you start MMF. Cy MMF/ Cellcept > well, my visit to the nephrologist today could have been better, > could have been worse too I suppose. My serum creatinine has gone > up again to 242 (micro moles per litre I believe, I wish the medics > would standardise), not as steep as last the last two increases, but > still going up, and I'm staring dialysis in the face in the near > future. He's offered me MMF (aka Cellcept I think) I've read papers > on it, has anyone any anecdotes for me? > > I've been left to think about it, in the mean time I'm going to try > and clean my act up, and cut out the booze and stick to a low > protein diet, I've already kicked gluten into touch...I wonder if > that was what has slowed the progression down :-? > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > 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 May 7, 2003 Report Share Posted May 7, 2003 Chalk it up to a string of great coincidences. The better part of that was a cut and paste from a post that was recently went out from NephKids. I never understood how the mechanism of cellcept differed from other immunosuppressants until it was explained to me. Cy. Re: MMF/ Cellcept > Wow Cy! > > You wowed me with that explanation! Thanks for the details. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 , You are at about 2.7 creatinine now and being told you are two years away? I couldn't remember if that was your creatinine level now or if I was confusing you with someone else. I think we have many members who have gone much longer after creatinine levels in the mid twos before dialysis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 I am so sorry to hear that your wife is going through testing for breast cancer. That must just be one of the most frightening things for a women to go through. You both do have your hands full of stress. You will both be in my prayers, and let us know how your wife's tests come out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Cy, My brother in law is a patent attorney, and it is amazing at the technology that is coming our way in the future isn't it. Fascinating field you are in! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 > Sorry to hear about your creatinine levels. Feh!, Yuck! Evil! so was I, my wife is finding it hard, she's having tests for breast cancer, so we're both a tad stressed. Poor woman has buried one husband who had motor neurone disease, at least IgA isn't that bad by any stretch of the imagination. <snip> thanks for the explanation on T cells. Many times I wish I was a biochemist not a cryptographer :-) > I'm surprised however, that they would consider putting you on it if you are > facing dialysis. With MPGN patients, that's the time they take patients off > of it. > Dialysis is ~ 2 years away so I'm told, far as I can tell, MMF sometimes puts IgA people into remission (please, that would be nice :-) and sometimes it slows it down, sometimes it just plain does nothing, it's a roll of the dice... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 You mentioned your wife earlier, but I did not know she was undergoing testing. Sounds like both of you are up to your eyeballs. Please let us know where it goes. I'll be keeping a good thought. It sounds like you are a wonderfully loving husband. Having lost a spouse myself, I know I'm pretty anxious about how many feet everyone around me has in this world. You crypto guys are the ones I was jealous of! I do patent law, specializing in medical devices, drugs, etc. The closest I've ever come to cryptography is data compression algorthymns. You guys do the hard stuff! Once we were short staffed so I ended up being assigned this very complicated data compression patent. The cryptography end of it wasn't too complicated: nothing more than a variation of Morse code. However, once all the symbols were determined, the compression part threw me for a loop. I was in so over my head it was not funny. I remain grateful to the client because he ended up writing the better part of the patent application. Cy Re: MMF/ Cellcept > > Sorry to hear about your creatinine levels. Feh!, Yuck! Evil! > > so was I, my wife is finding it hard, she's having tests for breast > cancer, so we're both a tad stressed. Poor woman has buried one > husband who had motor neurone disease, at least IgA isn't that bad > by any stretch of the imagination. > > <snip> > thanks for the explanation on T cells. Many times I wish I was a > biochemist not a cryptographer :-) > > > > I'm surprised however, that they would consider putting you on it > if you are > > facing dialysis. With MPGN patients, that's the time they take > patients off > > of it. > > > > Dialysis is ~ 2 years away so I'm told, far as I can tell, MMF > sometimes puts IgA people into remission (please, that would be > nice :-) and sometimes it slows it down, sometimes it just plain > does nothing, it's a roll of the dice... > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > 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 May 8, 2003 Report Share Posted May 8, 2003 Hi , Hopefully you will be able to weather your way through this latest spike. In 2000 my S. Creatinine had a fast increase and hit 3.0 mg/dl (I think which is around 257 or so in SI)and they told me that I would be on dialysis by the end of that year. Here it is May 2003 and my levels have been holding steady at 2.7 mg/dl for at least 6-8 months. So keep your chin up, do what your Neph says, take your meds regularly and live your life to the fullest. I think that many of us here have been holding our own well beyond what our Doctors beleive is possible. We'll help you emotionally get through what ever direction the ol'body decides to take you...We'll keep you in our thoughts. Connie Moderator, USA MMF/ Cellcept well, my visit to the nephrologist today could have been better, could have been worse too I suppose. My serum creatinine has gone up again to 242 (micro moles per litre I believe, I wish the medics would standardise), not as steep as last the last two increases, but still going up, and I'm staring dialysis in the face in the near future. He's offered me MMF (aka Cellcept I think) I've read papers on it, has anyone any anecdotes for me? I've been left to think about it, in the mean time I'm going to try and clean my act up, and cut out the booze and stick to a low protein diet, I've already kicked gluten into touch...I wonder if that was what has slowed the progression down :-? To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ 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 May 8, 2003 Report Share Posted May 8, 2003 I'll tailgate on 's message. You have our support and prayers on behalf of you and your family. I know it must feel like time is standing still, waiting for results. We are thinking about you. Connie Re: MMF/ Cellcept I am so sorry to hear that your wife is going through testing for breast cancer. That must just be one of the most frightening things for a women to go through. You both do have your hands full of stress. You will both be in my prayers, and let us know how your wife's tests come out. Quote Link to comment Share on other sites More sharing options...
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