Immune /natural killer cell treatment when ttc or pregnant (aka the 18th pred thread!)

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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

thank you Drttc
It's true that the 20 week one is what has been throwing everyone off in finding some coherent pattern or logical explanation as to why this keeps happening- incidentally I was feeling utterly sh!t during the whole of that pregnancy and every time I brought it up with midwives and consultants, I was patronized about "worrying too much" or being "hormonal" or "feeling understandably tired having to take care of a toddler whilst being pregnant again".... rubbish.
Anyway, it's all past now and hope that Shehata may have some thoughts or prior experience with our patients who may have gone through the same as me.

Anna I pm u last night I hope u got it glad u found urself here. Once again sorry about ur losses :(

I can't even begin to imagine the pain of a late loss. Like drttcc said - ur a very strong woman.

Just to add nk cells can be he cause for later mc too, at Argc they test ur immunes till 24 weeks as they think it can cause issues later too. Will be insightful to see wot mr s thinks about it. A lady called hopender on this thread about a year ago had a second trimester loss and 3 early mc after her first son. She had success with mr s plan :) she went on steroids and was told to be gluten free.

Ps I'm at Argc coz I have severe male factor as want them to make me the best possible embryos. Their plan is very similar to mr s except they use ivig if indicated.

It takes such a huge strain both emotionally and physically. I've often wondered how much more I can take before I have to give up. Have you tried acupuncture or reflexology? I've found acupuncture really helps to keep my emotions stable and gives me some stress relief... Definitely worth a try.
Also as drttc says there are lots of supplements that can help with egg quality. I know that my last loss was due to a chromosomal abnormality so I started taint DHEA and CoQ10 to improve my eggs. That could be worth a try.

I feel fine thanks drttc, sore boobs but that's it. Trying to just pretend it's not happening and get on with things day to day!

Seeking! Can I steal some of ur amazingness for if and when I get my next bfp. I'm a total wreck usually! It can only be a good thing for the bean to be calm X
So happy u finally got ur bfp :)

I think it's only because I'm so drained from everything before hand that I feel like I can breathe a little bit now. I'm sure it won't last long - got my first scan and IL's booked for 2nd March so I'm sure I'll become a mess before that!!
You need to make sure you look after yourself trying, give your mind and body some r and r I'm keeping everything crossed that this time things are more simple for you and you have less worry

Thanks seeking! Mum taking me to me a spa day and got some Acu booked in. I can't do anything and will let Argc take over when I start!

That's all you can do. Just switch off, let them take control of everything. Spa day sounds lovely! I had one yesterday but obviously couldn't use half the facilities! But was nice just to relax and not have to do anything!!

Hey annaif welcome to the thread - I read your other post too and wanted to say I'm so sorry for your losses. The late loss in particular must've been horrific.

I can really empathise with the mustering up of the strength to try again and I know you just feel between a rock and a hard place. But in answer to your original question ie:who to choose, I would look at the detail of the Nk tests. For some reason when I was tested by shehata he tested me for Nk cells but I don't know if it was the uterine ones. Where as quenby does The uterine ones I believe and is cheaper. But she is based up in the Midlands. Anyway mr shehatas protocol worked for me in the end I went onto steroids etc and had a baby after 3 miscarriages (all in 1st trimester).
As someone else up the board said he is quite direct and to the point and at first I found this quite difficult to swallow. I also felt a bit rushed in my appointment with him but the more I saw him the more I got used to it and actually found It easier that he was quite clinical. It meant I left my emotions at the door. And I'm incredibly emotional.
This pregnancy I am not under mr shehata I am under an nhs miscarriage consultant who does support my steroid use (as it worked before) but basically it's the same system. The other test I found useful was the mutation gene test which shehata did - and I have MTHFR gene too so am on clexane for that. Anyway enough of my rambling hope that helps!

In other news I have had terrible diarrhoea for a few days (soz tmi) and major paranoia pregnancy. me and Google need to go our separate ways I think!

Actually can anyone shed some light on the uterine Nk cell vs Nk cells in general?

Happy Valentine's Day ladies, hope you and your dh's have had a lovely day.

Tumtimes - I'm not sure on why some Drs do blood nk levels and some do uterine biopsies. I'm sure someone in here though is more clued up than me

Hi ladies
(sorry quick message as Im at work!)
I think the uterine and blood nk cells is just different ways of thinking.
I had the uterine test done with Prof Q (after 2nd mc) and it was normal - so no treatment needed. Then had 3rd mc so went to Dr S for blood test and diagnosed with high complex NK cells - so now on the usual protocol. Have had 2 chemicals on Dr S treatment. So no happy story for me yet.
Hope this helps xx

Thanks Billy15 that's so interesting. I wonder what the difference between the two is. What made you decide to go Quenby first just out of interest. I always wonder if I should had my uterine ones tested. x

I think it was the cost really. And seemed like the easiest some how, at the time.
I was also worried that my uterus wasn't being slective enough as my first 2 bfp were first try. I think Id heard that the biopsy can correct this. And also that it can work the other way - if you not getting preg can improve chances (I think they found this with IVF too). But after this it took me 6 months to get bfp so I then worried it had done some damage! Hypochondriac I think!!

To be honest I found it really painful. They described it as a biopsy, but then it was also described as a scratch - and they kind of scrape the inside I think. I took a sedative and had gas and air as Im a wimp so was very high! But I think I read other people say it didn;t hurt so dont let that put you off!

Yes its hard to know which tests to do with such conflicting opinions. Mybe have both like I did!?

hi ladies, newbie here. On prednisolene 6 days now. Can't sleep! My question is, has anyone any success stories of starting the treatment for HIGH NK CELLS on positive pregnancy test? I found out I had high activity and count 2 days before I got positive test so was put on progesterone, prednisolene. I had been taking aspirin for 8 was. Saw shehata on NHS who gave me the above prescription. Then went to a private consultant today, day 6 - Dr Gorgy who prescribed me clexane injections to start in the morning! He gave me an intralipid also. I'm so worried it's too late and I should have started the intralipids and pred on day of ovulation... Some success stories please! I've had 3 miscarriages. Xx

Hi Amelia, firstly sorry for your previous losses. But congratulations on this pregnancy. Take everything day by day, take your meds and have hope that you will be successful this time. You're doing everything you can.
I'm pretty sure Sunny started her treatment at bfp and has recently had her little miracle baby.
With my last pregnancy I also started 4days after bfp - it did sadly end in mc but that was due to a chromosome abnormality. I believe that I had that not have been an issue the treatment would have worked for that pregnancy too.
Good luck, and if you need any support this thread and these ladies has been amazing to me over the past 10months since I joined.

Hi amelia. Whilst I'm not a success story quite yet I only had intralipids from 6 weeks and only needed three instead of 4 because everything was looking so good. Congratulations! I know it's hard but try to relax, you are doing everything you can and you are in good hands

Hi amelia welcome. I also started prednisolone once I got my bfp and had a healthy baby girl 9 months later. Previous to that I had had three miscarriages on no medication. So don't worry! I also started the clexane at 6 weeks.

This pregnancy I did the same, started pred at bfp but clexane straight away.

Ugh I'm so nervous I've got another scan this morning - I'm 8 weeks. My symptoms seems to have faded a little and it's making me para as per usual. Will update you all later on. Keeping my fingers firmly crossed. X

Good luck tumtimes keep us updated.

Hello Amelia Im sorry for your loses! I'm sure you'll find some comfort in this group.
With my 4th preg I started Pred on bfp as I'd been taken off it due to side effects. I'd been put onto Hydroxy instead but I was supposed to take this for 6 weeks before trying as it takes this long to build up in system. I'd only been taking it 2 weeks tho when I got bfp. This preg ended in mc sadly, but I think with me a lot of my problems is now egg quality as Im 42.
Like the others say try to stay calm (easier said than done) have you tried meditating? Keeping fingers crossed for you xx

Good luck tumtimes, hope all goes well. I've got ages until my first scan! Why can't we be those people who find out at like 8 weeks or something. Knocks half the worry time out immediately! For obvious reasons we'll never be those though!

Good luck tumtimes

Good luck Tumtimes!

Seeking- hope you're hanging in there! Thinking of you!

Hi everyone
Tumtimes I hope you've had a good scan?
Let us know how it went.

Just a general question to the whole group: I am seeing Shehata privately for the first time next Monday and I have already started feeling stressed out about it!

I have already been thoroughly examined at St Mary's and have done some investigations at UCLH so if I collate all results made available to me and bring them to him, do you think he will accept them or is he generally insistent on running all tests in his own clinic?

The main test we want to do with him is for NKCs which I haven't been checked on yet; will they be taking blood on the day or is the first consultation generally a one to one with him?

I read somewhere that a lady was asked to "come with £2000 on her"- is that actually possible?! I mean, do they request patients to come with cash in hand?! I may have misinterpreted the post entirely but just wanted to check what the protocol is so that I go prepared.... I have been seen by so many NHS clinics/hospitals and I am so used to having to fight for any test to be done to me that I don't quite know what to expect in this case!

Hope everyone is doing well this week- mine started slightly rubbish ysd, hope it will get better

Hi Annaif,

I can definitely understand why this is stressing you out - it is emotionally, physically, and financially draining. We try not to think about how much we've spent as we are by no means well off! Having all the tests done does come out to about £2k unfortunately and I believe the priciest ones are the NK cell related ones. There are definitely some that can be taken off if you've already done them or can get them through your GP so you can save a few hundred pounds. I don't believe they would tell someone to bring cash (we certainly didn't!) so I think that person was joking a little about the situation. We had the bloods taken the same day as it's a long journey down- but had the option to think on it of course. Good luck Hun x

Also if you could get the list of blood tests from the office and ask which tests can be done via NHS, then check which ones you may have already done, then perhaps you can get a head start on things.

amelia Welco e to the board! Hopefully you find it a good place to get support. Seeking is right, I started pred and intralipids once I had a bfp ;which I only discovered about a week after AF was due), however iwas already taking hydroxy and had taken pred 6 months previously before having a break so I'll never know if that made a difference or if it was the hydrixy which was added when I had a mc in the treatment a few months earlier. I also only ended up having 3 intralipids due to timings etc. I think my advice would be that you can't change where you are and all you can do is start taking the meducation. As I said I had a mc on the treatment and I was devastated as I thought it was 'the answer', but 2 months later I was pregnant again and I've just had a baby - I don't think we'll ever know why one time it works snd other times it doesn't.

anna when I went to Dr s, the first appt we talked through my history, he gave me a scan (to rule out PCOS - as u thought I may have it - I didn't) and then he explained the blood tests he wanted me to have. At the end the cost was just over £2,000 BUT I didnt have any previous tests to take with me. He also said which tests I could get done at my GP and bring with me to the next appt. I'm sure if you already have tests he will review the results and advise you if they need re-doing for any reason. You don't need cash - I've always paid by card. If you go to Harley street, you have to go round the corner to a different clinic to gave your blood tests but you pay at his clinic if that makes sense. I was very nervous before I went but it was fine - he is very straight talking and to the point but I quite liked that as you know where you stand and what he thinks. Louise, his midwife is also really lovely and very easy to talk to. I never felt like I had to fight for anything with him, he listened to what I saud and face me his opinion.