PRA / Antibodies - explain? Mine was 47% but now is 7%?

[angieskidney]

I have never been told about the PRA (is that right?) or Antibodies in any detail but today I finally found out that my antibodies were at 47% but as of Oct 2006 was down to 7%. I will be able to get what my new % is by the end of this month hopefully. I was told the lower the number the better so I thought 7% was good .. til my social worker told me they want 0%. So I got the impression that this would be why I haven't had a transplant yet this time around? I have been waiting since 2001.

Really I want to understand all this stuff. There is no one here really explaining it to me (here being my city).

 

[renal30yrs]

Any of us once had a transplant or two will end up having higher RPA for a while.  Blood transfusions also cause similar effects.  If you are wishing to get a transplant and have high RPA figure, a number of different therapies are offered to bring down your antibodies.

[angieskidney]

Any of us once had a transplant or two will end up having higher RPA for a while.  Blood transfusions also cause similar effects.  If you are wishing to get a transplant and have high RPA figure, a number of different therapies are offered to bring down your antibodies.

I had a transplant before and many many blood transfusions in the past (from 1990 to 2005). She told me plasmapheresis would only be an option if I had a LIVE transplant lined up.

[renal30yrs]

There are other options.  I know 2 patients that are currently undergoing those sessions at Stanford.  Do inquire.

[paris]

7% is good in comparison to many. The higher the PRA, the more people you will react to. Below 10% is pretty normal (from what my doctors have told me)  Some will do a couple of pheresis treatments at that level as an extra precaution.  Most transplant centers aren't equipped to do phereisis with transplants.  That is why Jill D. went to Mayo. The hospitals in my area don't do it yet, which is why I am now working with Johns Hopkins.  Mine is 100% and has been for a long time.  Keep asking your health team questions and learn all you can about PRA.  So much stuff they don't tell us when we first get diagnosed, but that is why there is IHD!!!!

[paris]

Also, yes, plasmapheresis is only an option if you have a living, matching donor. They do the treatments, along with IVIG, test for positive crossmatch with your donor and repeat until the levels are acceptable; then immediately do the transplant. They follow up with more treatments, so it can be several weeks from start to finish.  Check Jill D's posts. She really gave detailed information when she went thru it.

[okarol]

PRA stands for Panel Reactive Antibody
Here is a good description of approaching a living donor transplant
with a positive crossmatch. http://www.umm.edu/transplant/kidney/highpra.html

[angieskidney]

PRA stands for Panel Reactive Antibody
Here is a good description of approaching a living donor transplant
with a positive crossmatch. http://www.umm.edu/transplant/kidney/highpra.html

Thank you for that! Very informative! I love all your informative posts you post here.

So much stuff they don't tell us when we first get diagnosed, but that is why there is IHD!!!!

Actually I was diagnosed in 1982 but I didn't learn about it with my first transplant since I was a teen and didn't particularly care at that time. lol

7% is good in comparison to many. The higher the PRA, the more people you will react to. Below 10% is pretty normal (from what my doctors have told me)

I didn't know that. My renal social worker said 7% was still high as they want 0%. This is what I want to know more about. Since it seems they are not always right.

Thanks everyone!! 

[renal30yrs]

I wouldn't rely on anything a social worker has to say clinically.  They have a degree in sociial work not nephrology or immunology.  Go direct to transplant centers and inquire.

[angieskidney]

I wouldn't rely on anything a social worker has to say clinically.  They have a degree in sociial work not nephrology or immunology.  Go direct to transplant centers and inquire.

She was quoting me what the transplant coordinator told her to tell me.

[jbeany]

What qualifications does the coordinator have?  Most of the ones I have are RN's, but apparently they switch from one section (different organ transplants) to another frequently.  Some of them don't list any title or medical qualifications after their name on the business cards at all.  What kind of job skills does it take to become a coordinator?

I'd ask the neph or the surgeons for a real answer!

[angieskidney]

I have another question about my PRA! What makes the % go down? I mean .. how did I go from 47% down to 7%?

I know what makes it so high but what makes it go down? Can dialysis do that??? 

[angela515]

Blood transfusions, previous transplants and pregnancies all cause your PRA to rise. Making you harder to match anyone. Luckily for me (and I thank God) my PRA was 0% and I have had 1 previous transplant (from my mom), many blood transfusions (although once I learned about PRA I always denied a blood transfusion unless I was deemeed to die without one.. anything to stop the PRA from possibly going up is good.) and I also have had 3 pregnancies, with 2 births. So I thought my PRA would be high, but it was 0% shockingly enough.

(Dunno why i'm posting a reply as angie is banned.)

[carson]

47% - yep that's pretty high, but i went to see my transplant team last week for my yearly meeting and my PRA is at 98% - woo hoo! I'm screwed.
They told me all about the IVIG and plasma exchange. Ima scared of needles! AND I don't have a kidney lined up. They said they'd do it with a cadaver kidney but I've got to make the committment to the treatment.
Lots to think about....after 10 yrs, I am getting pretty sick of PD!

[cambonesegirl]

47% - yep that's pretty high, but i went to see my transplant team last week for my yearly meeting and my PRA is at 98% - woo hoo! I'm screwed.
They told me all about the IVIG and plasma exchange. Ima scared of needles! AND I don't have a kidney lined up. They said they'd do it with a cadaver kidney but I've got to make the committment to the treatment.
Lots to think about....after 10 yrs, I am getting pretty sick of PD!

My PRA has been 94% for a few years. I thought I was screwed too, but I did get a transplant. They suggested plasma exchange for me too but I never had that done.

[lola]

We found out today Otto's is 100%

[alrightstill]

I feel everyones pain.  My PRA has been above 90% since 2001 when my first transplant failed.

A  hospital in NYC is pushing for me to get the IVIG treatment .. but I just haven't decided yet if that's what I want to do.  I'm still researching it..