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

[sunnyday01]

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

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).

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!

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

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.

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)

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...

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!

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?

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 :(

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.

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!

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!!

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

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?!

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

Hehehe about you synchronised AF. Hopefully loads of BFP in about 3 weeks time
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....

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.

Thanks hula! Is an injection? How much is it?

So what does Humira do exactly??
All this DQa stuff seems so confusing So hard to get your head round! I hope we all get synced bfps! I doubt I will. I reckon a few more cycles for me!

Oh Trying you will have your baby.
Sperm DNA fragmentation test is good to have and if it was high there are things you can do to improve it.
Please don't worry about your BMI, by all means go to gym and diet as it makes you feel better about yourself and it is satisfying to achieve something and be able to be in control of at least something in your life (helps me anyway).
I spoke to a haematologist and there can be so many mutations. Even if they don't find one there might be something they will discover in 10-15 years time. Was suggested to me to use clexane/fragmin continuously while TTC even though I tested negative for mutations but never had yours tested. Have high homocysteine/lowish proteins C and S thought....
If you are doing IVF clexane is usually part of the protocol anyway, isn't it, so that is covered.

I was also told that I need to be on some sort of blood thinners when on steroids etc as there is higher risk of blood clots when using steroids..
Minefield...
Determined I actually even contacted dr Braverman when I was really upset about all this chemicals a few weeks ago. He seems to be very good but when I calculated how much he would cost I just couldn't justify the consultation. He seems to be using Neupogen a lot + IVIGs and steroid/intralipids.
There are limited treatments anyway, the problem is to find out which one would /will /is working for me...
Hence the decision to go with Serum and pay the money I would pay him for consultation/further tests for actual IVF and treat immunes with anything available.
Think Dr beer said the success rate is around 80% with immune treatment but that is based on 3 IVFs or 3 pregnancies...
So that's what I am trying to do. Give a treatment 3 goes and if that doesn't work it is time to change and try something new.
It is great that your retest showed that steroids are actually working for you. What did they retest? Was it the NKcells activity? And how does it change you treatment plan? Does it mean you need to take pred continuously or still only from ovulation?

The humira is anti-tnf so it's used if you tnf is raised. Mine was normal hence not advised but I think argc are going to want to retest my immunes as its been over a year now...
London would u do ivf with PGd? Added cost but at least u wouldn't have to go through it wondering if it chromosonal loss or not? I regret not doing it now...I know I'm only 31 but maybe I just have dodgy eggs and dh def has poor sperm...the American babycenter websites use it a lot and ive read of 32/33 year old ladies with 50-70 percent of embryos being chromosomally wrong!

Trying well we went for initial consultation with reprofit in Czech Republic in may and talked about it with the consultant and it is not actually that expensive there. They recommended to freeze all embryos and test them(if there are any to freeze of course) and do FET with full on immune support. Unfortunately their full on immune support is only steroids/ 1 or 2 intralipids and blood thinners.
If my retest comes back fine than I am happy to go with their plan. And do the genetic testing. That's what dr Ndukwe recommended as well.
Unfortunately I can't find the clinic which would be strong on immunes and do genetic testing and we can actually afford.
In ideal world we would 'only' do IUI with Serum with their immune treatment. They however only offer immune treatment to IVF patients....
But back to genetic testing of embryos... from what I read it is not 100% reliable. Good embryos can get damaged when tested. They test on day 5 so you can lose genetically right embryos which stop developing before day 5 but might be ok if transferred on day 3. Which is OK if you have many embryos. But if we tried it at 40 we would do mild IVF and only expect 3/4 eggs top.
Also what would you do it you went through with it and ended up with no embryo? Try again? How many times? Would you go for donor eggs/donor embryo?
Sorry for such a confusing post, as you can see I am still trying to figure it out myself.

Just to answer the humira question as trying said its an anti-tnf drug so only applicable if u have high cytokines. Usually is a two injections given 2 weeks apart and cost £800 for this course and then you retest cytokines 2 wks later. In 5% of people they can go up and you then have to repeat it (another £800) which happened to me but supposedly still shows the same sucess as those that didn t flare. As you can only have 4 injections dr s didn restest my cytokines again. I think high cytokines are more related to infertility (which fits in my case as now 18mns since last preg).

Swlnanny - sounds a really diff descision re pgd on the embryos, would be very hard not to have any make it. I m 40 too and its difficult how it adds another question as to how much egg quality is an issue (esp as i have low amh) however i have a positive over 40 story that my mum told me today which is that my great nan had her last 4 kids at 40, 41, 43 and 45 ! And that was in the 1920s so likely suboptimal diet and certainly no prenatals vits or q10.

God it really is mine field isn't it! Surely it's not supposed to be this hard! I'd never heard of cytokines and nk cells before all this! We may have all been dealt a crap hand but by god are we a strong bunch! I often think that I've been given this journey as Im mentally strong and despite my moments, I know I can get through this.

Hula it must be so frustrating for you. You have your son so you know your body can do pregnancy. I don't think AMH can say anything about egg quality. Have you had your vit D levels rechecked recently by any chance? Read somewhere that low level of vit D can make your AMH lower(how does that work I have no idea..) also how about your DH sperm? I actually went through 12 months of no BFP (after getting pregnant every few cycles before that) and even my GP said it was 'my fault' as I am older!!! Even had the stupid hysteroscopy to check what was wrong with me.... all hormones rechecked, did acupuncture 2x a month... everything was fine. Had massive argument with DH (who was refusing his test as I was getting pregnant before so there can't be anything wrong with his swimmers!!!!) and refused to carry on with TTC so finally he went for his test and was told that the only way for us to get pregnant was ICSI!!! Because of his count /motility...
Since then I always say to anyone who doesn't get pregnant for a while (6months) to have sperm test done...