Going to three weeks between infusions--post transplant

[Deborah Deffenbaugh]

Alyssa recently asked her  doctors whether she could move to three weeks between her Soliris infusions because she ended up going three weeks due to an illness she had on the week she was suppose to receive Soliris last month. Dr. Kouides (her hemotologist) spoke to her nephrologist and transplant team and the doctors in Iowa and has decided to go ahead with the three week plan.  They plan to keep a  close eye on her blood levels during this trial, but I am wondering if anyone else who is post-transplant supported with Soliris has gone beyond the usual two week infusion schedule and if so how it has gone?    I thought I remembered someone going to three weeks and then having some changes and needing to go back to two--but wasn't sure if it was a post-transplant patient or someone who still has his/her native kidneys.  I would greatly appreciate anyone weighing in on this topic with any thoughts. She did go three weeks once so far and thankfully, all is well.

[Cheryl Biermann]

So, happy the information was forwarded to you before anything nasty happened! 

[Deborah Deffenbaugh]

Nevermind--false alarm.  I guess Dr. Kouides idid some additional research and  talked with the Alexion Dr.s and was told that 5 out of 18 patients who stopped treatment or missed a dose relapsed and he is not willing to take the risk.  He said the "half life" of eculizumab is 11 days so stretching it to 21 cannot be justified.   We are certainly happy to stick with what is working.  Hopefully sometime in the not too distant future, medical advances will allow for more opportunities to either discontinue or try less frequent treatments, but for now,  "if it ain't broke, don't fix it" works for us.  Certainly do not want to put that beautiful new kidney at risk!