IVIG- Treatment for HIGH ANTIBODIES so you can GET A TRANSPLANT!!!!!

[kimcanada]

Awesome Julian! I will be following closely 

[paris]

Great news!  We are very excited for you   

[julian230]

Thank you! Thank you all ! This is obviously most beneficial to those who have had previous kidney transplants , or have had any types of birth or any other reason to raised PRAs. So the article is not working ? The medication is called  Velcade , or bortezomib .  (Take that spell checker!) Google that , +transplant. That might be more helpful.

[julian230]

In case you don't have time to peruse the internet all day looking for the GOOD articles , here they are
http://www.guardian.co.uk/lifeandstyle/besttreatments/2008/dec/30/new-treatment-shows-promise-for-kidney-transplant-patients
http://www.healthcentral.com/newsdetail/408/622609.html
http://myeloma.org/main.jsp?type=article&id=1201
https://trialx.org/clinicaltrialinfo/81850/kidney-transplant-velcade-high-immunological-risk/
http://www.health-journal.co.cc/2009/01/kidney-transplants-patients-can-be-help.html
Alhough I'm sure it repeats itself.

[pelagia]

Wow, this is very cutting edge stuff.  It seems to be gaining very widespread attention, very quickly.  Are you at the hospital where they did the original trials?  It's great that you hooked up with docs who are involved in the next phase.  You will definitely have to keep us posted about this journey. 

[julian230]

Unfortunately I'm not at a hospital does did the original trials. The original trials were at the Cincinnati hospital, and than I believe the Mayo Clinic did some studies too, but with every news I got bad news today . Today they told me they might have to hold of because the insurance company (of course) does not want to pay for it because it is considered experimental. Which is funny , because IVIG cost something like 50k while this drug cost 13k (considerably cheaper) . We are hoping that the doctor who wants to try this stuff out will write a letter of how much he believes this will work, but for the mean time, it will NOT be tried out yet  on me  I absolutely HATE this roller coaster ride of "yes , no , yes , no ... this drug that drug" . I wish it was as simple as Yes you'll get it ! But nooooooooo! Oh well! I'll keep you guys posted .

[pelagia]

Sorry that the news was not what you were hoping for today.  Maybe the doc's letter will help.   

[Beth36]

My mother had a positive crossmatch transplant in June at Mayo Clinic. She was given the drug Jill spoke about and was the first person to receive it. Her antibodies are at low levels and she is doing great. She had plasmapheresis and IVIg. Her doctors are Dr. Stegall and Dr. Gloor also. I hope everything works out.

Beth

[julian230]

Beth36, do you remember the drug name? Was it experimental? How she end up getting it?

[Beth36]

Juilan, the name of the drug is eculizamab....it was something the doctors at Mayo decided she needed to try because of her high antibodies. It protects the new kidney from being attacked after the transplant. She had to have it because her PRA was high....it fluctuated some but never went down really low. She was given IVIg before the transplant for a day. Then, she had the transplant. The drug was administered for a few weeks every couple days until she went home from Mayo. By home, I mean when she was able to leave the state of Minnesota and go HOME. She stayed at Mayo for a long time but my parents rented an apartment in a building near the hospital. They used this drug on other transplant patients, just not on kidney transplant patients. My mom was participating in a study and they told her she was the first person to receive this drug and she was considered a success. Now that she and a few others now have used it, they are hoping to get FDA approval for the use in kidney transplant patients. I don't know if it's considered experimental, per se....it is used, just not in kidney patients until recently. I so hope you find answers and get to use the meds you need for your PRA and transplant.


Beth

[pam49]

I have 98% antibodies.They said finding a match would be slim and none.And slim was on vacation.All my kids and my sisters were tested.Then I have a sister that my Mom adopted.She has had sooo many miscarriages(too many to  count) and she has 3 living children.She kept saying that she was my match because she probably has so many antibodies too.She is my match.We are waiting for her 24 hour urine test results.But so far so good.We go to class April  9th.So there is hope.

[kimcanada]

Oh Pam!  Congrats!

[julian230]

Pam that story gives inspiration that ANYTHING is possible! Thank you. Beth thank you for explaining all of that info to me.
The insurance (and surprisingly) approved the drug Velcade! So they I can start , this is the longest road I've been in my life, and there is a hundred more miles of this road .

[pelagia]

Wow Julian, this is great news!  If you can just take it one day at a time, before you know it you will be looking back. 

[monrein]

, this is the longest road I've been in my life, and there is a hundred more miles of this road .

Yes indeed, but you just hitched a ride and peeled off a good chunk of it.    Excellent news Julian.

[slk76]

Hi there
I finally get to respond after almost 2 years
It is not true that IVIG will only work with living donors.  3 years ago when I was getting my transplant and doing IVIG there was a young man at Cedars who was also doing IVIG but had no living donor.  The idea was to keep his PRA down so that when a matching donor came up he'd be able to take the kidney
So you CAN do IVIG without at living donor, at least at Cedars.

[paris]

My     At my yearly round of tests yesterday at the transplant center, the surgeon said "with your PRA you will never get a call, we have to do something to improve your chances"   We went through all my history--listed at two centers and why. Living donors tested and denied.  So, he is going to do high dose IVIG therapy with Rituxan to see if my PRA will go down at all.  It will increase my chance for a cadaver kidney.   The Rituxan is used in chemotherapy for non-Hodkins lymphoma. It kills b-cells and helps to "erase the memory" and hopefully reduce my antibodies.  It will be given once a week,for 8 hours, for a month.  The Rituxan causes the side effects you have with any chemo. And they have to overload you with fluids to administer it, but the surgeon feels it is worth trying and I will be well monitored.   He said I was the most informed patient he has had and that is why he is willing to try anything to help me. He can tell I am committed and compliant and educated.  Thank you IHD!  And yes, I told him about the forum!  He has a very serious face.  He looked at me and said"this is me laughing"     He loved the sites name.   So, tell me your opinions--good and bad.  I have stopped thinking about a transplant for awhile and know this might not make any difference. I am not thinking this is a miracle.  But, another step in the whole process.  I am between hopeful and scared.  And stressed.  I know, breath deeply!!

[Sunny]

Paris,
I hope this works for you. I have the same issue with my highest PRA at 96%. They now do IVIG at Stanford but have told me I need to be nearer the top of the transplant list for them to consider giving me the treatment. I have been on that list for 5 years now.

[paris]

Sunny, that is what another surgeon told me last year.  Luckily, this year the meeting was with the surgeon who is the head of IVIg and plasmapheresis department.  He says the program doesn't have the best results, but he is now hoping I will change his statistics!  The other two centers I have been with, would only do it with a living donor. The surgeon wants to try this first; if it makes a difference then he will work up the people who went through the origiinal evaluations three years ago and see if we still get a 100% pra.  It is all a long process, isn't it?  This all happened by chance.  My co-ordinator didn't let me know they had even started the program.  Not sure what her job is except to "co-ordinate" my appointments.       I know it doesn't work for everyone.  We shall see. I think I would try anything.   

[Wattle]

Paris I think it is great. Anything to try and increase your chances at a transplant is worth a go. Once you start dialysis you will have a different perspective of getting a transplant.

I think I would try anything.

I know I would try anything. My PRA is fine it's my HLA genetic markers that are the problem and I can't do anything about those.   

[vandie]

Sunny, that is what another surgeon told me last year.  Luckily, this year the meeting was with the surgeon who is the head of IVIg and plasmapheresis department.  He says the program doesn't have the best results, but he is now hoping I will change his statistics!  The other two centers I have been with, would only do it with a living donor. The surgeon wants to try this first; if it makes a difference then he will work up the people who went through the origiinal evaluations three years ago and see if we still get a 100% pra.  It is all a long process, isn't it?  This all happened by chance.  My co-ordinator didn't let me know they had even started the program.  Not sure what her job is except to "co-ordinate" my appointments.       I know it doesn't work for everyone.  We shall see. I think I would try anything.

It is definitely worth the try and I am thrilled that you have that chance. 
I think you have to be your own coordinator and let that other gal be your secretary.
Much love. . . .

[kimcanada]

Paris, I am excited that something is happening towards your transplant....  remember you are not in this alone


Your transplant bud in Canada

[Wenchie58]

Paris...maybe you will get lucky with Rituxan like I did.  They gave me pre meds of benedryl IV and simple tylenol and I never had any side effects.  It is so worth it to get your "shot". ya know?

[Jill D.]

Elizabeth, this is great news that some action is happening in your quest for a transplant! It pays off to be well informed and proactive. Love and hugs to you!!!   

[slk76]

Paris,
I hope this works for you. I have the same issue with my highest PRA at 96%. They now do IVIG at Stanford but have told me I need to be nearer the top of the transplant list for them to consider giving me the treatment. I have been on that list for 5 years now.

Go to CEDARS!!! The woman, Dolly Tyan who helped create the high dose IVIG protocol with Dr Jordan at Cedars is now at Stanford.  My mom and I are friends of hers, due to our trying to get the word out about IVIG, and she has told us that Stanford really isn't interested in using the protocol at this point they feel it is too cost ineffective and time consuming.  At Cedars you should be able to get the correct treatment.  I'm from N. Ca and had my transplant at Cedars 3 years ago after being denied at UCSF, Stanford and California Pacific due to my high antibodies.  Even though it sounds like you do not have possible living donors you should get listed at Cedars and start your path there too!  You can be listed at more than one hospital in more than one region as far as I know