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Immune /natural killer cell treatment when ttc or pregnant (aka the 16th pred thread!)

992 replies

sunnyday01 · 05/06/2015 19:22

This is a thread for those diagnosed with high or very high natural killer cells and trying to concieve or are pregnant and taking steroids/intralipids etc

Newcomers very welcome

OP posts:
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5
Hula2 · 16/07/2015 17:40

Dr - re Humira u start it any day of cycle as doesn t affect cycle and since dr s now recommends continue to ttc and says its safe even if early preg.

swlondonnanny · 16/07/2015 16:23

Hehehe about you synchronised AF. Hopefully loads of BFP in about 3 weeks time Smile
Am 9dpo of the cycle when we are not TTC. Because of my antibiotics... DTD once 4 days before I ovulated. Used protection....DH low sperm count and motility.... why on earth does my body think that I am pregnant??? Sore breasts, dizzy, sleep for England, ovary I ovulated from is very sore...
Guess TTC for a long time makes us all - well definitely made me - crazy. With messed up hormones....

Tryingno1 · 16/07/2015 16:23

Yay to all on af! Hopefully some BFP at same time (except me) Envy

Tryingno1 · 16/07/2015 16:23

No Idea determined. It's hard isn't it. When u fail on tx u feel u need somethin else. But maybe it actually was chromosnomal? And with pcos it can be a matter of time before it's the right egg?? I think I told u of my
Pcos friend-4 muscarriages one after ivf. Then a baby boy just on metformin never went down NK testing. And second unplanned preg?! No miscarriages. Really bizzare....
Shehata doesn't buy the dq and lad stuff as don't a lot of docs ive seen. To be fair tx is IL and pred or ivig....or LIT (illegal in USA!).....so I suppose getting it tested doesn't help unless u would consider LiT. esome Matches are really bad news and they suggest donor-which to be fair I wouldn't want to know!

Hula-my ivf clinic counted day one before 1pm and after 1pm day one was day after. as every day v imp in ivf. Urs ironically was 12pm, so techunally would be day 1 that day?!

Determined123 · 16/07/2015 16:13

Ha ha...right now I'd be a gang member Grin

Determined123 · 16/07/2015 16:12

Swnanny/trying/hula i quizzed Dr s on it too and got the same answer as I believe we may have something like that...(da alphas) but not tested just yet. Have you ever seen bravermans site in the U.S.? That has loads of info!!

Just had acu so I really hope I sync up too!! Day 40!! FFS!!

Drttc · 16/07/2015 16:12

So funny that we're all AF-ing together! Pooooor partners!

I'm thinking about asking Dr. S about Humira on Monday... Do you know when on your cycle you're supposed to start it? I really feel like what I'm on isn't enough :( Nothing really changed in the last miscarriage!

Immune /natural killer cell treatment when ttc or pregnant (aka the 16th pred thread!)
Hula2 · 16/07/2015 16:06

Hi ladies,

Interesting stuff about the match. I asked Dr S about tested for it as wondered if we had this issue but he said he didn t believe in it at all. So hard to know.

Trying - you WILL have your baby, you are strong with an amazing Dh and i know you ll get there some how.

Afm - af arrived (dr, trying and seeking i think we all almost in sync !). Now have scan timing dilema as due to the weekend and my work i can either get one day 8 (or 7 depending on when i count day 1 as af started about midday?) or day 12/11. Last month i triggered on day 11 (but hadn t started natural surge) so i m thinking stretch to 11/12.

Deterimed great news on results.

Tryingno1 · 16/07/2015 15:52

No nothing! No medical issues at all :( and all my autoantibodies for everything are totally normal. My NK cells are normal too! Just a little hyper. The ivf clinic found these clotting mutations (c4/m2 and pa1) but only CARE (nduke used to work for the nottingham one) across UK test for them so I don't think argc will buy into them! Tx was clexane for it which a lot of the rm consultants use anyways regardless of a clotting issue. So Myabe my NK cells are just more crazy when I'm preg ? Im not sure what it is, but this was the earliest loss ive had. I had one at 9 weeks last year....maybe I have bad eggs and they are chromosnomal? Dh thinks his sperm
Is prob contributing so tmrw will have fragmentatiom tests et. My bmi is 25 now ( was 24.5 pre ivf but have put on weight) sure that's not helping either. But diet and gym on way and I'm hoping to be bmi 24 by time I next cycle. I doubt I'll ever find the answer, but I hope I have a baby some way :(

swlondonnanny · 16/07/2015 15:16

Fingers crossed they will have earlier appointment for you.
I can't remember - do you actually have any autoimmune problems? Which could cause immune flare ups?

Tryingno1 · 16/07/2015 14:59

I'm sorry about ur bad exp...I had an egg collection and it was totally fine. Just sore and tender for a few days after but I was totally knocked out. I'm sure if u told them ur concerns they would ensure u had enough sesation on board.
I've read amazing things about serum and I hope they have the answers for u....
I'm still investigating argc but it looks like they test ur tnf and NK cells weekly?! As well as ur hcg and progesterone. (Need to clarify these pts) And then tx if things change. I've spoken to some women with rm Who went to argc who had normal tnf levels (like me) but then they flare in preg so had humira a few times. I'm hoping the intense monitoring plus maybe PGD is what I need...it's so hard to know isn't it. Yep appt is september but I'm obviously going to be rining for a cancellation weekly!

swlondonnanny · 16/07/2015 14:51

I think they want them over 50 ideally. Mine were all under 4!!!! Maybe with your levels intralipids and pred could deal with any flare up.
I think ARGC are much stronger on immunes than Zita west. A bit more expensive than ZW but it is all the blood tests/immunes which make ARGC so pricey. Sorry did you say you'll see them in september?
Hope all goes well tomorrow with urologist and they can help....
If my retest is no good our next plan of action is to go to Serum in Athens in September and do IVF but using IVIG and Neupogen and having LIT as well. I don't know how that is going to work as I keep waking up all last week because of nightmares about hysteroscopy and egg collection. I think my mental health wouldn't cope with it. I know many people do it and are fine but I had bad experience with NHS diagnostic hysteroscopy when they refused to use any anaesthetics at all...

Tryingno1 · 16/07/2015 14:33

Again don't undedatand lad thing- but mine is low-the B cell igg is 18.7 and T cell ig g is 23.7 not sure which is the imp one! Again decided to ignore it (well my ivf consultant said intralipds and pred would be enough to deal with the dq issues)

Tryingno1 · 16/07/2015 14:29

Thanks london. Such a minefield. I was wondering about going to nduwke at Zita west, but I figured seeing as im up heaving my whole life might as well just take the plunge at argc. Plus I thjnk nduke ivf is quite new and we need good Isci too with dh sperm issues. Got our urology appt tmrw and I hope he can make my dh sperm top notch before next cycle! I'm sure 4.5 years must have taken its toll on, I'm 2.5 in and tired. I hope the pred will be doing its job like determined.

swlondonnanny · 16/07/2015 14:19

My DH is 0103 0103.
If we ever have a child it will be 0501 0103. My understanding is that as 0501 is so strong in trigging immune response that even if it is not a match to me it can still cause problems. I don't know what your lad was but I saw quite a few results on different websites and mine is the lowest i've seen. Like in under 4... every one of 4. So if the theory says that it shows how much protective antibodies my body produces - well clearly none....
Oh and this DQa thing could explain my DH parents and grand parents problems with infertility and miscarriages...
I am currently under dr Ndukwe at Zita West but last time I saw him he clearly doesn't know what to do with me anymore. So had a long chat with my gynaecologist back home and am pretty much doing what determined did with trying pred etc and have a retest. Results next week so can't wait.
I actually never had any test to check if there were chromosomal issues with embryos as I always loose them too early - before 4+6 so only chemicals. Only with the second one I got to 5+3 but noone is interested in second miscarriage.
I am going to be 40 next month so it is very likely that it is my age etc but I also had 2 chemicals with previous partner in my 20s.
Have been doing this for over 4 and half years and some of those chemicals were on pred, hydroxy and intralipids.... so that's why I looked into all this DQa/LIT etc. And would be willing to try LIT/IVIG etc.
Yes looking at your results it looks like 25% of your embryos are match to you so in theory can cause strong immune response. But with close monitoring you should see straight away if there is a problem and can deal with it....
Sorry for such a long post

Tryingno1 · 16/07/2015 13:56

Ur poor mum ;( but glad to her she had 2 lovely daughters back when there was no tx...my dh mum had 2 misarriages but my family is a fertile no issues family!

Tryingno1 · 16/07/2015 13:56

Thanks london I didn't get the de beer book so not to make me more confused! I've heard the 0501 can evoke a strong response for some reason-is that u have the 0501 and ur dh has 0501? As in u share that?
Me and dh are
0103 0105 - 1.3 and 1.1
0105 0501 - 1.1 and 4.1
So a 25 percent chance of matching embryis so I'm told?! (When the 1.1 and 1.1 meet).

swlondonnanny · 16/07/2015 13:48

Trying cross post here.
It is a minefield. Especially when Dr don't agree on treatments and there is no standard protocol.
Dr Beer is very good at explaining all of this LIT/ DQa match malarky in his book.
I personally believe that this was the cause of my mum's miscarriages. I am the oldest one, she had loads of issues/ stayed in hospital when pregnant with my sister and miscarried 3x after. Than she was told off by Dr for trying (can you imagine?)
Mine is 0501 0501 which dr beer said can trigger immune response in following pregnancies even without match. I explained all this to my mum and she actually cried and it looks like that she blamed herself for doing something wrong and causing her miscarriages for all those years. She had some sort of closure, really.
By no means I am saying this is what is causing your problems. Just that it can explain miscarriages but generally with second pregnancy etc when the first one triggers immune response....

Tryingno1 · 16/07/2015 13:37

Thanks london. That's wot these forums r good for-exchanging specialist advice! Between us all we will have seen a lot
Of top speciliasts! It's so annoying they don't all agree and no one really knows why rm happens....who r u under at the Moment then? I'm sorry I can't fully rem ur history-have u had any misvarriages on Tx? Have u managed to get any tested to see if they were chromosnomal or not?

swlondonnanny · 16/07/2015 13:35

Trying of course you follow what your clinic recommends. I wanted to know what / if you were doing something about low LAD as I wanted to hear someone else's opinion on it. There are people who swear by LIT and people who didn't get any result from it.
I personally would have it as don't think it can cause any problems but resent spending £2K at dr gorgy for it as I don't feel that it addresses my main problems. The way your new clinic goes about it seems to be the right way -monitor and deal with any issues with pred, intralipids, IVIGs.
I believe you will be in the best hands there. From what I heard it is pretty full on but they do get results...

Tryingno1 · 16/07/2015 13:31

Thanks for that dq stuff london, I think I partly ignored it as was only 25 percent match and saw that wasn't the biggest deal and il and steriods should deal with it. In my head this last miscarriage was Chromosonal. I was on il pred and hydroxy (although only 2 weeks pre bfp). So I don't know wot else can be done if it wasn't chromosomal :(

swlondonnanny · 16/07/2015 13:28

Determined great news about your retest, it's always such a relieve when the drugs work.
About your long cycle - I had a couple of random long cycles - think 45days - and it seems to be connected with my thyroid. I even ovulated on those cycles, just very late. Fingers crossed the acupuncture will sort it out for you.

swlondonnanny · 16/07/2015 13:23

Sunny yey great news about the scan, very happy for you....

swlondonnanny · 16/07/2015 13:21

Seeking I know you were probably asking trying but this is what I found about DQa and matches (copied from someone's blog but it explains it quite well. I had the test done as I just wanted to make sure we checked everything and we have no match...
It is really difficult to say what is and is not important when TTC with immune issues
SO WHAT IS DQA AND HOW DOES IT IMPACT TTC?

The DQa gene sits on chromosome 6. Part of our immune system one of its key roles is helping the body identify and prevent foreign antigens from attacking and making us sick.

When it comes to DQa we each get a representation from our mother and from our father. These are represented in numbers - eg 1.02, 1.01, 05.05.

Having a genetic match for DQa actually doesn’t impact the health of your embryo or baby.

Instead a match impacts the connection between the paternal DNA contribution (sperm) and the maternal body (uterus).

Normally something in the sperm’s DNA sends a signal to the uterus that this foreign body (embryo) is ok, allowing it to implant.

In the case where the male DNA contribution of the embryo shares the same DQa gene as the mother this message is thwarted.

The uterus then fails to recognise the embryo as a separate body, instead seeing it as its own “self”. The immune system kicks in with NK cells to eliminate the embryo as it views it a risk.

In layman's terms - owing to one number, on one chromosome, my body systematically attacks and rejects our healthy embryos as it can’t tell the difference between my own DNA and my husbands!!

My understanding is that DQa can be the cause of:

Recurrent miscarriage
Failure to implant
The activation of NK cells in the uterus (in response to repeated implantation of DQa embryos)
Secondary Infertility (in response to a DQa pregnancy making it full term causing a build up of NK cells)

Determined123 · 16/07/2015 12:48

Thanks trying-Probably not for another cycle or 2...just need one last try at getting cycles better and if not then I'm on it!! I've got hydroxy in the mix too now just to see if it helps?! Another womb/someone else's blood probably better but not sure that's possible...Smile

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