Desensitization with PP+IVIG and Bortezomib

[wildcat]

Hello,
I have high level of antibodies, due to already having a living donor kidney transplant that I rejected after 9-1/2 years, and my doctor has proposed a treatment of using PP+IVIG and Bortezomib over several weeks. 

Has anyone received this treatment?  Please comment on any details you can provide like side-effects, how well it worked for you, what was the treatment like. 

[mike22]

What transplant center will you go through. Are you preparing for another live donor surgery or just waitlisting.  I dont have any experience with this but I hear these new desensitatizatiion protocols are pretty good. My first deceased donor transplant last 8yrs and my antibody level is high. I am also looking to graduate college and find programs with updated protocols.

[wildcat]

I receive care at the University of Wisconsin Hospital.  They have a great transplant team there.  My care has been superb over the last 10 years.  It is a fairly new treatment for them and they have only used it previously for patients rejecting a kidney.  They are proposing it for me to increase my chances on the deceased donor waitlist.  My antibody levels are very high which means a very long wait.  Hopefully this will help.  I am concerned how this new drug will react with me and if it will be worth the time invested in the infusion treatments.

[mike22]

This is amazing. I know there are some centers that do this protocol for both live and deceased donor. Which is why i am considering moving after college.

[okarol]

My friend went through the desensitization progam at Cedars here in So. Calif and got her transplant about 6 weeks ago - it's her 4th transplant and she's doing great.
http://www.cedars-sinai.edu/Patients/Programs-and-Services/Kidney-and-Pancreas-Transplant-Center/ABO-Incompatibility-and-Sensitized-Transplantation/Highly-Sensitized-Transplants.aspx

[mike22]

@okarol- Ive heard about this program and california is a spot i'm considering along with DC

[lawphi]

My thirty year old husband did one round of PP with Rituximab pre- retransplant at John Hopkins.  I imagine he will have two more rounds post transplant. 

We flew in from Charlotte and rented a place for a month.  My husband has/had a 94% PRA and found a freaking kidney in two and a half months.  I am sure he is the exception and not the rule.  We are spending $5-6k out of pocket, but it is a substantial tax deduction.  It could be done cheaper in Baltimore, we just did not have the time. 

My husband had a mild headache when the IVIG Cytogam started.  However, he had in center dialysis that day and is highly allergic to the solution.  The headache lasted a few minutes.  There was no PP issues pre transplant.  I will post if there are any post transplant.

The most important consideration for a re-transplant is a center with re-transplant focus, with PP and a large access to a paired exchange.  We have had the best experience at John Hopkins, while I still hold Wake Forest Baptist dear to my heart.  You can look at the UNOS data pages for re-transplants, PRA figures and graft survival.  The West Coast appears to have a much larger donor pool than the East.  It would not hurt to look to a center on each side of the country. 

As to the graft survival, males do better than females.  Most re-transplants are much older than you two. 

[mike22]

@lawphi- Thank you for this valuable insight. I am often surprised at the subtle difference in transplant protocols in different transplant centers.  UAB and VAnderbilt are great, without a doubt. But I know there are others than are a little more advance than these two. Your right the use of PP in transplant does interest me sense it helps lower antibodies combine with other powerful IV drugs. 

So ill be graduating on May 13 and finding a place to start my life will include a transplant center that is advance in treating a highly sensitized patients.

I didnt know that the west has a higher donor pool than the east.  To me in the south, the pools are not that great. Hypertension and diabetes is prevalent i the south which makes it harder for me to find a live donor. UAB transplant center is the only state in Alabama which worries me. One doctor told me it could be 10-12 year before I get one considering my antibodies and just the nature of the list. Vanderbilt is new and good but it doesnt have protocols like Hopkins, Mount Cedar Sinai, UCSF , Mayo Clinic, Boston and others.

[lawphi]

We have had an additional pheresis treatment with no issues. Antibody testing will be be back tonight, but no issues apparent at this point.  Creatinine is down to 1.8 four days post transplant.

Mike, are you currently Looking for a kidney or planning ahead?  Most transplant centers are focusing on the first time around.  The technology is spreading, but most centers are watching others to see the outcomes for retransplantion.  .

All  the major retransplant centers exchange donor/recipient information to find paired exchanges. My husband's kidney was shipped from Northwestern.  Our donor's mother received her kidney from Barnes.   I actually watched the flight on my iPad.  I will donate over the summer at JH to keep the chain going. 

Surgically, Hammett had a midline incision (third transplant). He had more pain issues post wisdom teeth removal than this transplant.

[mike22]

@lawphi I listed at two centers now for a second kidney.  I have two years at UAB and 1 year at Vanderbilt, so not a lot of time. I go home for a year after graduation to switch to PD and get used to it. In about a year or so, I'm looking to relocated not for the sole purpose of transplant but for graduate school also.  The DC area and Texas I'm looking to go for graduate schools and maybe Califorinia. The DC area is a good fit because I have a best friend their and he is from Texas, coincidentally. So that gives me a support system, hopefully. Long answer short, I guess you can say I'm  planning ahead. Right now I dont have any live donor prospects and I dont think I ever will. I am aware that the wait could be longer because of my high PRA.

[lawphi]

Mike:  Good luck to you in your studies!  I hope the right kidney finds you soon! 

Hammett has had three pheresis treatments post transplant with no side effects or issues.  He received various drugs (cytogam, rituxmab and something else) with no issues as of yet.  We will receive the second round of antibody testing tomorrow.