Immune /natural killer cell treatment when ttc or pregnant (aka the 17th pred thread!)

[Hula2]

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

Belly what a well written positive post. Was wondering how you were doing.
I followed the thread from the beginning, nearly 5 years of TTC and 14 chemicals later we are still no closer to having that baby than we were 5years ago. I am so happy though for Lisa and many other ladies who did get to have their baby/babies at the end. And very brave of Lisa to share her journey with everyone.

Just watched first heartbeat and both me and the DH have been in tears - was so emotional watching it understanding every thought and feeling so closely.

Also lively to see some ladies of threads gone by, I've read every post from the beginning and I have often wondered how everyone is

Im a newcomer to Mums Net so you will have to bare with me - I'm not quite privy to how it works and terminology just yet!
I joined after watching Lisa's documentary last night because it was so so close to home and I feel like I will be able to get extra support and advice from these forums.
I have miscarried 4 times and although I have been diagnosed with killer cells and I am now on intralipid, I am also now on ovulation stimulation to try and get pregnant for a fourth time.
I thought First Heartbeat was so honest and so real and myself and my husband related to every word and feeling.
I have to stay positive and keep the strength there to get to my 5th pregnancy. We have been trying now for over a year and have recently started on Clomid to try and help. I am still having the intralipids every three months, going up to every four weeks once pregnant as well as steroids, clexane injections, pessaries and prednisolone.
I'm so glad I've found this thread, I don't know anyone who has been through what I have - this might just keep me going. X

Hi lucie

Welcome to the thread, you've come to the right place, there are lots of us on here with high NK cells and all the ladies on here are very friendly and know what you're going through x

Most of us are under Mr shehata at the miscarruage clinic, who are you seeing for your treatment?

If you read back through past threads you will see most of our stories. Hopefully you can find hope but also support on this group x

Thanks so much! I'm under Dr George (Ndukwe) at The Zita West Clinic in London. I'm actually from Yorkshire so we are doing a lot of travelling at the minute.
We had to pay private though as the NHS wouldn't do anything else for us!
I only got diagnosed in April after my four miscarriages so I haven't actually been pregnant yet under treatment.
We are in London next week for this months ovulation scan to see how the Clomid is working so we are hoping for a conception soon! It's been a long time coming though- this is the longest it's ever taken us to conceive. I will read through the thread - I think I will find strength from this X

hey lucie welcome, sorry to see you hear but glad you joined.

I've heard GREAT things about dr george and so I'm sure your in the right hands. i hope u get this bfp soon.

i hope you find this thread helpful and useful and supportive.

I've also had 4 miscarriages. i had 3 (all natural and v quick conceptions). nhs showed nothing so went to mr shehata and was told i had high NK. i then didn't fall preg for 10 months and was about to tear my hair out!! DH had a sperm test and it showed V V low count - hence the no bfp (ps this is really rare). he's developed testicular failure and his hormones have gone WHACK and count is falling so we have been freezing it...

anyways this led us to IVF....we had one cycle with the IL/steriods/clexane and aspirin but it sadly failed a few months ago.

I've now turned to argc and waiting to start ivf 2.....zita west clinic was also on my list on who to go to they are meant to be brill, but i think argc are good with male factor infertility which is our first hurdle and i just hope they know wot they are doing post BFP too....

had a great holiday. feeling postive and hopeful.. most importantly DH is feeling stronger. he wasn't sure how much more he could take....but now he's ready to keep going until we both have the strength. i feel much stronger knowing this. i think with IVF onto of RM has been too much for him to deal with plus i think guys find the whole low count thing hard to deal with too!

seekign and hula when is test day?

ps i think LOADS of women will be lurking after the show (i haven't been able to watch it, not sure how to as was away yest?)

anyways maybe a recap of us all might get the lurkers feel like they can join in!

ill try copy and paste the old stats and lucie if you add yours to the end!

Ah ok, I can sympathise with the travelling as we live in northamptonshire and had to travel to Epsom regularly for Mr shehata.

My local nhs were also very unhelpful - was basically told to go away, loose weight and keep trying. My gp has been great though and given me many of the drugs needed in prescription.

I did assusted conception/ super ovulation - Dr s uses letrozole rather than clomid though, I got pregnant on the 5th month but sadly mc it very early (3rd mc) but I then got pregnant naturally and am now 25 weeks pregnant - I'm still very nervous and have everything crossed that this is my little miracle. I was on pred, intralipids, prigesterone, aspirin and pregnsncy vits as well as hydroxy which is another drug Mr s uses on some patients.

i can't find our summaries. shall we all post them again?

TRYING - 31. TTC since may 2013. 4 mc (3 natural conceptions) 1 ivf mc while on immune treatment. high nk, high TNF. DH has low sperm count so ICSI. waiting tnf to drop, then IVF with argc.

Hi Lucie, sorry for your losses. I'm glad you've decided to join. These forums have been a lifeline to me over the last two years. But especially this group of ladies who I joined in April. I hope you have some luck soon. Dr Nduke is supposed to be brilliant.

Glad you had a lovely holiday Trying. Some times a break away is all you need to strengthen up and feel ready to get going again. Glad DH is feeling better too.
I think I've only just ovulated so DH and I are busy trying to catch that egg Will be testing around 25/26th.

My stats are

Seekingmiracles: 31 TTC 2 years.
4 MC, 1 on treatment (chromosomal).
High nk cells and PT Gene variant. Pred/clexane/aspirin/progesterone.

Thankyou for all your stories so far. I hope that I can in turn be a support to you all in the weeks and months to come.

I don't mind the journeys really Sunnyday - so pleased for you re pregnancy. Hope it continues to go well!
I saw Dr Shehata on last nights documentary - he seemed brilliant.
I do have to say though Dr George, and all the other staff at Zita West are fab. They have given me hope when I was ready to give up.
Thanks for the stats Trying & seekingmiracles - suppose my stats are as follows:

LucieHaxby - 25, 4 MC (3 natural, 1 ERPC), TTC since Jan 2013, high NK killer cells, v low Vit D. On Vit D, folic acid, Clomid & intralipids. Once PG will be on clexane, calcium, prednisolone & cyclogest

Welcome lucy.

snoopysimaginaryfriend 30 years old, ttc since sept 14, 3 mc (1 on treatment but not started until five weeks), diagnosed high nk cells, pre existing hypothyroidism, on pred, cyclogest, intralipids, thyroxine, aspirin and vitamins.

Snoopy u missed out the most vital part

Can't say the 'p' word. I'll say positive hpt on 10th September

That's brilliant Snoopy - you ladies are certainly giving me hope

Hi Lucie

We were with Zita West, having been with Prof Regan and Dr Shehata - you are in great hands and he has been through miscarriage himself so can really empathise. Although we weren't successful, you have plenty of time on your hands because of your age, unlike us. Wishing you all the luck in the world. For anyone else reading this, Jane Knight, the counsellor at ZW is also excellent if you are struggling or want advice on your next steps.

P.s. You don't need to be a ZW patient to see her x

Yes BellyD although it is horrible to go through at such a young age as it consumes your life so early, we are lucky that we have a head start so to speak and that hopefully we still have many years ahead to keep trying.
So sorry that you have not had a success - if you don't mind me asking what is your history?
Thank you so much for posting - I haven't really spoken to many other women at ZW. I haven't really made conversation while I've been there as I know how nerve wracking it is sat in the waiting room!
I may ask about the counsellor when we are there next week xx

Hi Ladies
Im fairly new to this forum too. Its great to hear the positive outcomes on here and I really appreciate you ladies for your support so far. Wish I could give you all a hug! And wishing all the preg ladies all the luck in the world.

Would love to have seen the show but dont have TLC. does anyone know of another way to view it?

My stats...

42 year old - ttc since Aug 2013 - 1st preg Aug 2013 mmc at 12 week scan, baby stopped developing 8wk 1 day. 2nd preg Dec 2013 mmc 10 weeks, baby stopped developing 8 weeks 1 day. 3rd preg Dec 2014 - chemical. Started Dr S treatment for complex NK Cells and Tyroid Antibodies Feb 2014. 4th Preg 2nd cycle of supper ovulation with Letrozol Aug 2014 - mmc at 7 week scan - only a tiny ges sac (chemical preg).

Treatment since Feb 2015 - Prednisolone from ovulation, asprin, supplements, intralipids from positive. Also take Maca Root, Royal Jelly, Magnesium, Calcium, vit D. Have been off sugar, gluten and dairy since 2012/13, and have acupuncture twice a month (was having chinese herbs before Dr S treatment).

Am really struggling to feel positive since this 4th mc (in Sep), have recently discovered partner has low sperm count and suboptimal sperm. Feels like things are just getting worse and we just getting older!

Went to see Dr S last week. I find him quite intimidating/pushy and I never end up asking all the questions I want to! he has now said I shoudl take hyroxy instead of Pred as I said it was making me moody. But we have to take it for 6 weeks before ttc - but I dont want to wait that long as after a mc your meant to be more fertile so I dont wanna miss that opportunity and want to take a break form supper ov. Has anyone has success on Hyroxy instead of Pred? Am worried it wont work as well.

Dr S said if partners 2nd sperm test is the same we will need ICSI - not sure my partner will be up for this as he has struggled with the intervention so far.

Has anyone else felt it really wouldnt happen for them and then gone on to be successful? Im worried my feelings are my bodies way of saying its too late! Have no hope left atm!

Sorry this is a long post!!!

Lots of love to you all xxx

(...also these are my only pregnancies - I dont have any other children
xx)

Hey ladies! And hello to the new/returning/lurking ladies as well!

My stats are:
Drttc age 29, 4 chemical pregnancies (6 wks+few days max, 1 on treatment), w/ Dr S from March 2015, very high NK cells, other previous immune issues (chronic hives and alopecia) now gone, New teatment plan: standard Dr S prenatal vitamins, NAC & ubiquinol Coq10 (my own research), mostly gluten free since May 2015, hydroxy 2x daily, Pred from ovulation, pre-ovulation intralipids, Cyclogest from ovulation, the intralipids every 4 wks at bfp.

Hi Drttc
Can I ask the reasons your treatment plan changed?
(I wished I'd asked Dr S more last week - Im not even sure he was clear that Id had another chemical on his plan.)
thanks x

Billy if u look back sunny had success on hydroxy. She got her bfp while she was on that and started pred at 5-6 weeks when she realised she was preg. She had previously had a mc on the pred alone.

Rosa also took hydroxy and pred and is in the 2nd trimester.

Mr s seems to use it when u fail on the pred or have side effects.

irs so hard but so many success stories on here. I've often worried I won't ever get my happy ending but we just have to keep going and hope and pray!

Hi Billy,

When I had my miscarriage on treatment in June he suggested that because my immune system is so aggressive (I don't get very far along into pregnancy) that I need further pre-conception treatment to help the pregnancy establish itself. Hence The early intralipids! Im also on double hydroxy because i was still getting terrible hive attacks. Since doubling my dose Ive only had one minor one- huge improvement!

Drttc age 29, 4 chemical pregnancies (6 wks+few days max, 1 on treatment), w/ Dr S from March 2015, very high NK cells, other previous immune issues (chronic hives and alopecia) now gone, New teatment plan: standard Dr S prenatal vitamins, NAC & ubiquinol Coq10 (my own research), mostly gluten free since May 2015, hydroxy 2x daily, Pred from ovulation, pre-ovulation intralipids, Cyclogest from ovulation, the intralipids every 4 wks at bfp.

snoopysimaginaryfriend 30 years old, ttc since sept 14, 3 mc (1 on treatment but not started until five weeks), diagnosed high nk cells, pre existing hypothyroidism, on pred, cyclogest, intralipids, thyroxine, aspirin and vitamins.

LucieHaxby - 25, 4 MC (3 natural, 1 ERPC), TTC since Jan 2013, high NK killer cells, v low Vit D. On Vit D, folic acid, Clomid & intralipids. Once PG will be on clexane, calcium, prednisolone & cyclogest

TRYING - 31. TTC since may 2013. 4 mc (3 natural conceptions) 1 ivf mc while on immune treatment. high nk, high TNF (33.6). DH has low sperm count so ICSI. waiting tnf to drop, then IVF with argc. will be on pred/intralipids/clexane/asprin/humria before and maybe IVIG if required post bfp

Seekingmiracles: 31 TTC 2 years.
4 MC, 1 on treatment (chromosomal).
High nk cells and PT Gene variant. Pred/clexane/aspirin/progesterone.