Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Hi Guys! I hope every one is well!staying warm too!Man the temp sure has dropped here at Fort . I got a call from my sons Neph today and he goes to Vanderbuilt Childrens Hospital wich is also Vanderbuilt University, any way they have a study of a experamental drug for IGAN patients and Blake meets the qualifacations they want to know if I want to put him in the study starting in the new year. The meds are suppossed to have all the affects of steroids without the side effects. I was just wondering what you guys thought about something like this. We are so new to the disease and Im nervous about putting Blake in the study. with out really getting things under control for him in the first place. Just give me your thoughts. They did say i can come to classes about the meds to make my decision. i talk to every one real soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Did you catch the name of the drug? It might be CellCept -- there are a number of trials going on all over the country with this drug. I wasn't eligible in Boston because my protein measure was too low -- you need to pass at least .5 grams, or they can't measure enough to see if it is effective. It's probably a worthy study -- I'm allergic to Prednisone, so I would have to use something different anyhow. Walt > Hi Guys! I hope every one is well!staying warm too!Man the temp sure > has dropped here at Fort . I got a call from my sons Neph > today and he goes to Vanderbuilt Childrens Hospital wich is also > Vanderbuilt University, any way they have a study of a experamental > drug for IGAN patients and Blake meets the qualifacations they want > to know if I want to put him in the study starting in the new year. > The meds are suppossed to have all the affects of steroids without > the side effects. I was just wondering what you guys thought about > something like this. We are so new to the disease and Im nervous > about putting Blake in the study. with out really getting things > under control for him in the first place. Just give me your > thoughts. They did say i can come to classes about the meds to make > my decision. i talk to every one real soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 ,,,,,,,,,,do you recall the name of the drug?,,,,,,,Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 , I have been on a study before and I loved it. You get the meds free which is a help. Also, they may even do the Dr. visits free too if they have to see him to measure progress. When they decide to do a study, they know by then that the drug is safe, but they need a wide range of people to measure % side affects. > [email.htm] > <html><body> > > > <tt> > Hi Guys! I hope every one is well!staying warm too!Man the > temp sure <BR> has dropped here at Fort . I got a > call from my sons Neph <BR> today and he goes to > Vanderbuilt Childrens Hospital wich is also <BR> > Vanderbuilt University, any way they have a study of a > experamental <BR> drug for IGAN patients and Blake meets > the qualifacations they want <BR> to know if I want to put > him in the study starting in the new year. <BR> The meds > are suppossed to have all the affects of steroids without > <BR> the side effects. I was just wondering what you guys > thought about <BR> something like this. We are so new to > the disease and Im nervous <BR> about putting Blake in the > study. with out really getting things <BR> under control > for him in the first place. Just give me your <BR> > thoughts. They did say i can come to classes about the > meds to make <BR> my decision. i talk to every one real > soon. <BR> <BR> > <BR> > </tt> > > <br> > > <!-- |**|begin egp html banner|**| --> > > <table border=0 cellspacing=0 cellpadding=2> > <tr bgcolor=#FFFFCC> > <td align=center><font size= " -1 " color=#003399><b>Yahoo! > Groups Sponsor</b></font></td> </tr> > <tr bgcolor=#FFFFFF> > <td align=center width=470><table border=0 cellpadding=0 > cellspacing=0> <tr> <td align=center><font face=arial > size=-2>ADVERTISEMENT</font><br><a > href= " http://rd.yahoo.com/SIG=12cie86of/M=267637.4116732.5 > 333197.1261774/D=egroupweb/S=1705061589:HM/EXP=1070515820/ > A=1853618/R=0/*http://www.netflix.com/Default?mqso=6017833 > 8 & partid=4116732 " alt= " " ><img > src= " http://us.a1.yimg.com/us.yimg.com/a/ne/netflix/yhoo11 > 03_a_300250A.gif " alt= " click here " width= " 300 " > height= " 250 " border= " 0 " ></a></td></tr></table> </td> </tr> > <tr><td><img alt= " " width=1 height=1 > src= " http://us.adserver.yahoo.com/l?M=267637.4116732.53331 > 97.1261774/D=egroupmail/S=:HM/A=1853618/rand=988496396 " ></ > td></tr> </table> > > <!-- |**|end egp html banner|**| --> > > > <br> > <tt> > To edit your settings for the group, go to our Yahoo > Group<BR> home page:<BR> > <a > href= " http://groups.yahoo.com/group/iga-nephropathy/ " >http > ://groups.yahoo.com/group/iga-nephropathy/</a><BR> <BR> > To unsubcribe via email, <BR> > iga-nephropathy-unsubscribe <BR> > Visit our companion website at www.igan.ca. The site is > entirely supported by donations. If you would like to help > , go to:<BR> <a > href= " http://www.igan.ca/id62.htm " >http://www.igan.ca/id62 > htm</a><BR> <BR> > Thank you</tt> > <br> > > <br> > <tt> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 I'm guessing it's probably CellCept, or maybe Imuran, but if you find out, , please let us know. Pierre Re: New Meds Study > Did you catch the name of the drug? It might be CellCept -- there > are a number of trials going on all over the country with this > drug. I wasn't eligible in Boston because my protein measure was > too low -- you need to pass at least .5 grams, or they can't measure > enough to see if it is effective. > > It's probably a worthy study -- I'm allergic to Prednisone, so I > would have to use something different anyhow. > > Walt > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 If it's a controlled, double-blind study as most are, of course, you don't know if you're in the group getting the drug being tested, or the half getting the placebo. Not even the doctor knows. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Hi , Not knowing what the drugs are, I can't comment, but going to the classes sounds like a good start. You'll be able to make a better decision once you have more information. I'm very curious what drugs they are using! Cy New Meds Study > Hi Guys! I hope every one is well!staying warm too!Man the temp sure > has dropped here at Fort . I got a call from my sons Neph > today and he goes to Vanderbuilt Childrens Hospital wich is also > Vanderbuilt University, any way they have a study of a experamental > drug for IGAN patients and Blake meets the qualifacations they want > to know if I want to put him in the study starting in the new year. > The meds are suppossed to have all the affects of steroids without > the side effects. I was just wondering what you guys thought about > something like this. We are so new to the disease and Im nervous > about putting Blake in the study. with out really getting things > under control for him in the first place. Just give me your > thoughts. They did say i can come to classes about the meds to make > my decision. i talk to every one real soon. > > > > > 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 4, 2003 Report Share Posted December 4, 2003 Hi Connie! Fantastic news about Ralph's creatinine level :-) I am so thankful that it is not only down, but stable too! I am sure you are very relieved. Is he still having as much flank pain though? I hope that is better for him too. Thank you so much for posting the information about the meds. I think Billie needed Epogen and didn't have insurance, so maybe she can call Ortho Biotech or Amgen about that program. I really appreciate you bringing it to our attention! Thanks again for sharing the good news about Cellcept working so well for Ralph. We are certainly rejoicing with you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Hi Connie! Fantastic news about Ralph's creatinine level :-) I am so thankful that it is not only down, but stable too! I am sure you are very relieved. Is he still having as much flank pain though? I hope that is better for him too. Thank you so much for posting the information about the meds. I think Billie needed Epogen and didn't have insurance, so maybe she can call Ortho Biotech or Amgen about that program. I really appreciate you bringing it to our attention! Thanks again for sharing the good news about Cellcept working so well for Ralph. We are certainly rejoicing with you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 Connie, I am so sorry Ralph still has such severe flank pain. I really wish they could do something about that for him. I think his flank pain is worse than for any other member we have. I was really hoping that had improved for him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 Connie, I am so sorry Ralph still has such severe flank pain. I really wish they could do something about that for him. I think his flank pain is worse than for any other member we have. I was really hoping that had improved for him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 Connie, I am so sorry Ralph still has such severe flank pain. I really wish they could do something about that for him. I think his flank pain is worse than for any other member we have. I was really hoping that had improved for him. Quote Link to comment Share on other sites More sharing options...
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