Anyone had any problems qualifying for transplant due to a high PRA, Panel Reactive Antibody count?

[OceanBreezes2021]

Anyone had any problems qualifying for transplant due to a high PRA, Panel Reactive Antibody count? If so, any help or advice would be more than appreciated. How does one get that count? mitigated or chelated? Thanks!

[ashok5085]

U might need desensitization depending on how high is PRA.

[Beachgirl32]

I been told I have high antibodies my PRA is 80 but it didn’t stop them from putting me on transplant list (Individuals with a high PRA value are often termed "sensitized", which indicates that they have been exposed to "foreign" (or "non-self") proteins in the past and have developed antibodies to them. These antibodies typically develop following previous transplants, blood transfusions and pregnancy.). My doctor said my was likely from pregnancy but it might have had a hold transfusion when I. Had brain surgery I can’t tecalll and my family can’t recall ..But my high PRA has stop me from matching but I have talk to people on here and some of them with a pra of z100 had a transplant so that give me hope . My last visit at a new transplant center I went to did say we may have to look into desensitization but my nephrologist is not to keen on it so we will see but you should be able to be listed fine .

[OceanBreezes2021 in reply to Beachgirl32]

Thank you for your response, Beachgirl32. My team is not very keen on the idea of the desensitization either. I don't know for sure why. To my understanding, the desensitization can be rather temporary, and the actual therapy to bring down the number can be a rather longish process. I guess the process can also depress your immunology as well. Adding in another risk factor. My numbers are so high, I personally think it's worth it in my case. The insurance company may beg to differ I suppose.

I really don't know much about any of this, I have just recently started looking into it. Thank you for your input!

[horsie63]

I've not been told I have a high PRA although it could be as I've had pregnancies and when I was in the hospital in Aug 2023 I had 2 transfusions. How would you find out?

[Darlenia in reply to horsie63]

It's known as tissue typing done by blood draws and requested by the transplant centers. I think it's listed is PRA or CPRA and as HLA on lab reports. My hubby's was fine since he's a guy who's never had a blood transfusion. So we put it out of our mind. But it's a larger deal for all those who received blood and for women who've had pregnancies. The NKF has a nice report on this: kidney.org/atoz/content/Blo....

[horsie63 in reply to Darlenia]

So these were the blood tests the organ people were doing when I was active before. I don't see it in the most recent blood tests I did for getting relisted by the transplant center.

[Darlenia in reply to horsie63]

Yup...the transplant centers order them, our center order them quarterly (I believe) in my hubby's case. I'd ask the transplant coordinator for the results if you can't locate them. It's good to know. OceanBreezes has good advice.

[OceanBreezes2021 in reply to Darlenia]

Thank you, Darlenia. And thank you for explaining the different lab names for the test. I was a bit confused on that. I wasn't sure if there were different tests or not.

To be honest, I find the lingo and nomenclature in the articles to be rather daunting and I have had a few biology and chemistry classes.

I'm glad to hear that your husband does not have issues with the pra score. Who knew that being able to become pregnant was a risk factor for developing antigenic cells?

My PRA is quite high. I just learned that. In fact, my team wasn't even tracking it. When they realized they needed to (a bit of a complicated side story) and the number, they were rather aghast as was I. This is a very recent discovery. I'm still in shock.

Thank you for the link to the article. I tried to open it once and it didn't seem to be going anywhere. I'll try again here in a minute.

[Darlenia in reply to OceanBreezes2021]

It's unjust isn't it. Moms get carded but dads get a pass. Ugh.

[OceanBreezes2021 in reply to horsie63]

As they haven't told you, you have a PRA, perhaps, you do not! If you wish to be sure, ask your transplant team or your nephrologist to run an HLA test. If you are active on the wait list they probably have been running one monthly. Perhaps just haven't told you... if it's not a problem.

[Winner76]

Hi,

I had 100% antibodies and they never kept me of the list they just told me I would be very hard to match . So patients like me are the first to be checked when a kidney becomes available. I was on dialysis for 8 years and got a kidney in 2020 it’s wasn’t a perfect match but it’s going great. I’m in Ireland they obviously do things differently here. I hope you get on a list soon.

Good luck !

[Beaujest]

my PRA was 90, I was highly sensitized, but I was listed and during 14 months on list I got three kidney offers! I took the last one. I do believe I was more at the top of the list because I would be hard to find a match.

[mamatutu]

I had two CPRA numbers. Class 1 and Class 2. Both were elevated at the time I was diagnosed and listed (74 and 20 respectively). I am a female, have had two children, and I also required two blood transfusions when I was hospitalized and diagnosed, 7-10 days prior to CPRA being measured. I was blessed to find a living donor and transplanted within 6 months and by the time I was transplanted my CPRA scores had dropped to 0 and 10 and were at 0 last time tested 6 months post transplant. All that to say my transplant center explained that while my initial values were high they can drop as time passes from the event that raised them (pregnancy, transfusions, transplants, etc) and in my case it seemed to happen relatively quickly. As I was required to provide monthly samples while on the transplant list, I was able to see my CPRA values drop. Also my high values were never a barrier to being listed but it was explained that they would make it harder to find a match.

[OceanBreezes2021 in reply to mamatutu]

Thank you so much for your thoughtful reply. I have been under the impression The PRA score was virtually unchangeable? Even after desensitization therapy which would be temporary at best. Although I did hear that the actual score might be dependent on the Lab used in which molecular techniques they used.

I'm so happy to hear of your results!

[EricaTO]

I had my transplant about 3 1/2 years ago, but as I recall, those with a high PRA get priority when a matching kidney becomes available because high PRA folks are so hard to match. So for me, I got a kidney sooner than expected and it matched nearly perfectly.