Positive Kir AA genetic result

[Sarslouise]

Hi all

I have found out I am positive for the gene Kir AA through my Spanish clinic. Complex area but may explain my miscarriages and difficulty getting pregnant over last 3 years. We are going for donor eggs in Spain now. No consultant has ever tested me for this gene in the UK. It’s a bit similar to NKC issues however I am normal for that test.

we now have to find a donor with specific genes (HLA11) so that my body doesn’t reject the embryo and also less chance of pre eclampsia with this type of embryo gene (another risk for me carrying this AA Kir gene)

Feeling rather blurgh about it but have read a lot.

Has anyone else found out they have this gene AA Kir? If so how did you get on?

Was it natural pregnancy or donor? Do you have any good areas to read about as I’m just getting my head around the HLA concept too ?

thanks very much I appreciate it if so x

Sarah

[Sunflower888]

Wow hope someone can relate to you but ive never heard of it.

[Sarslouise in reply to Sunflower888]

Thank you I hadn’t either! X

[DianeArnold]

Hi. I wish you well with this as it can’t be easy for you. Anyone replying please be mindful re advertising and reply by PM if necessary. Good luck. Diane

[Wishinandahopin]

hello! Yes I was tested and I have this gene too. KIR AA is more likely to reject ‘foreign’ things, like sperm/embryo etc. it particularly rejects embryos that have an ‘hla c2’ gene. So if the sperm provider or egg donor have that then they are more likely to be rejected. My husband had that Hla c2 gene. We had had two failed transfers of tested embryos when we found out. For KIR AA they will normally give you a drug called ‘Neupogen’ - this is what I was given, I took it every few days from transfer till 10 weeks pregnancy and that was the key that helped me keep the baby. I did develop preeclampsia though in the end but all was fine and I had a c section just before 37 weeks.

Happy to help if you have any more questions!

[Sarslouise in reply to Wishinandahopin]

Thank you SO much for your reply - I felt I was alone with this gene. So pleased to hear you had a successful pregnancy and delivery. Congrats!

That’s great to know about the drug too. I have a no of qus for my clinic, so I’ll add that to it

I’m not sure if they tested my husbands HCL genes but again I’m going to ask as it seems more of an issue if he’s HCLA2 as you say. Also hence they need to find a donor who is HCLA-C1C1 - which of course cuts things down a bit in terms of donor options. So I have to be patient.

Still wonder why I wasn’t ever tested with my UK clinics - they liked to blame it all on my age sadly which isn’t 100% the case it seems - I am super healthy with regular ovulation and periods. But I have to move forward now

Thanks again x

[Wishinandahopin in reply to Sarslouise]

It’s not widely tested in UK, the science is ahead in Spain and other parts of Europe. Our clinic, though in london, was a Spanish company so they recommended it. We ended up seeing their reproductive immunologist who specialises in it (she was based in Spain so we saw her remotely) and that is how we were able to move forward etc. Really hope you manage to find a donor etc, but yes I imagine it’s harder when you have to test them etc. Hopefullh your clinic will give you lots of help xx

[Aleksandaarr in reply to Wishinandahopin]

Hello I’m really in bad mood after our 5 unsuccessful ivf and we just got same thing my wife is kir-aa I’m c2 . I just want to ask you how was that medication did you have some side effects? Thank you

[Sarslouise in reply to Aleksandaarr]

I have a call with an immunologist in Spain as likely going on the Neupogen at my transfer in June. Be also to hear about any side effects !!thanks @Wishinandahopin

[Wishinandahopin in reply to Sarslouise]

That’s great news! Keeping everything crossed! I had no obvious side affects to the medicine, I was on it every 3 days until 10 weeks pregnant. The only side affect is a rise in white blood cells etc so the full blood counts can look abnormal whilst on it, but that is expected and goes back to normal once you finish.

I’ve just remembered I did also have a bit of bone ache in my legs, but wasn’t terrible. And also a normal side affects.

Hope that helps!

[Wishinandahopin in reply to Aleksandaarr]

Hi I’m sorry to hear this - 5 unsuccessful is so so hard. I had no obvious side affects to the medicine, I was on it every 3 days until 10 weeks pregnant. The only side affect is a rise in white blood cells etc so the full blood counts can look abnormal whilst on it, but that is expected and goes back to normal once you finish.

Good luck!

[Aleksandaarr in reply to Wishinandahopin]

Thank you for replying. We hope we gona make it 🙏🏻

[Aleksandaarr in reply to Wishinandahopin]

My wife asking when was you first shot from this therapy.. I mean how long before transfer you took your first shot?

[Wishinandahopin in reply to Aleksandaarr]

I think I took my first shot on the day of transfer and then I had to go back in the next day for a blood test to check everything was ok

[LovetoZumba]

hi there. Just reading your post now and yes after 6 years of no pregnancy following miscarriage I discovered this too at a clinic in Spain. I have KIR A/A plus both partner and I have same HLAC type. Spanish clinic told me to get donor egg due to my age and low follicle count but have found clinic in London who will support me with own eggs (will need a few rounds) but we’re going to try this with the suggested meds (uterine wash plus injections) and also immune support. How have you get on and are you going to try with own egg or do you need donor? Everybody says it’s age and egg quality: so boring. Nobody testing or looking for answers here in UK. You massively need to be your own detective it’s exhausting and time wasting. Keep going and hope you get your baby soon ❤️

[Sarslouise in reply to LovetoZumba]

Ah thanks for replying.

So we are about to go for donor eggs and they’ve found us a match in Spain (genetically the donor is C1C1 ) and looks similar to be. We currently have 5 blastocysts being PGT-A tested from 10 eggs retrieved. With my husbands sperm. I have to say I’m super excited. Hoping to go for transfer soon. I’ve just turned 44. It would have been great if this was found out a few years however I feel content with where we are at.

Wishing you lots of luck ❤️

[LovetoZumba in reply to Sarslouise]

Wonderful!! Lots of baby dust your way ❤️❤️