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

Hula- then don't think of it as giving up. Maybe think of it as being out of your hands now. You're not preventing after all! If it happens, it happens. Who knows, maybe all the pressure to conceive has made your body/mind too stressed? There has certainly been many a story about women who stop trying and will get pregnant at 40 even. I think what's really in your favour is that you're still young. I don't think anyone would be surprised if it happened (eventually)- because it simply makes sense. You're young, you ovulate, you had a child, and you'll have taken the pressure off. So that's my advice- don't see it as giving up, because you aren't. You're just letting the universe take control :)

Thanks, i m actually already 40 (eek!) so unfortunatley time is not on my side but yes i m sure the stress is not helpful esp as the month we concieved ds was the month we went for an ivf consult and almost prevented as we were going skiing the next month. Just wish i could blank out ov symptoms then think i d be ok. Oh well just another challenge in this whole thing !

Oh Hula- so sorry I thought you were younger as your DS is only little! Well I think what I said still applies :) I was mentioning last week how fertility is really a mysterious thing that isn't fully understood. Like Trying getting pregnant while not trying- despite DS not having many sperm. And on Instagram I follow so many ladies and come across the craziest stories. Actually, there's one woman who recently got her BFP and it's going so well. She's 41, with a toddler. Since she had her daughter she has had 6 chemical pregnancies. She'd been on letrozole but went off it last month... Now she's pregnant with great HCG numbers. I tend to follow women with many miscarriages- but these are real people like you and I and there really are many success stories. Have you done consistent acupuncture btw?

Hey hula sorry to hear ur struggling. I think it's completely normal. U have changed ur life totally and completely with ur diet and lifestyle and when u dtd...and now to feel like ur "giving up" i can imagine is very hard....but like drttc says ur not giving up. Ur leaving it to fate/what's meant to be.
After we got dh sperm count in May of last year we totally stopped trying. We just had sex when we felt like it. I rem finding it so bizzare after 2 years of obsessing over not drinking and not having coffee and knowing my cm...I still got all those ovulation warnings but I just didn't bother dtd as I knew the chances were slim. Ok so it's took over 14 months but I somehow managed a bfp....I've started wondering is stress does play a role?
Be kind to ursrlf, let ursrlf relax slowly month by month and talk to dh about how u feel about it all. I'm so sorry ur feeling confused/trapped by it all :(

We saw the urologist dh count is up to 0.3 million-still amazed we got a bfp out of that! He said the Chacnes are about 5-10 percent over 5-10 years with that count (some new study recently done). But previously it wasn't even countable it was so low - just a few swimming around. So it means if the meds continue to hold it at Isci time we will have loads for them to choose from..and I've been so worried about donor sperm/not havin anything on day of egg collection but I don't think I need to worry aboutT that anymore! Plus the urologist advised us to freeze some of this batch as it clearly got us preg so dh has been off to more freezing Appts. I still can't understand how I get preg so easily but loose them all :(
Some things are just not understandable! For now I'm focussing on me and having a nice time in my life. I feel I've let go of a lot of searching reading and questions(for now!)

Waves to everyone X

Glad you're doing okay Trying! Such great news that DH had got more sperm... This means you have more time! I know you were so scared he would go down to 0 sperm- so things are looking up! Great that you're taking advantage and freezing ASAP as well.

Hi ladies, I'm not sure if I should be here but I have just had the results back for my NK blood test and have been told that they are 15% and should be under 10%, the Dr called this 'slightly high'. I had a biopsy done too and am awaiting the results of that before heading into our clinic to discuss treatment, the Dr mentioned intralipids.
We've been ttc for nearly 2 years (unexplained infertility) and the reason we have had NK tests done is due to having 2 failed IVF cycles this year (one fresh and one FET) and wanting to rule out implantation problems. Our clinic prescribe prednisolone in any event so I had this for both cycles plus clexane (I have raynauds). I got a faint positive on my FET cycle but when I went to my clinic for a blood test my hcg levels were only 3.8.
I'm just feeling a bit really.

Thanks Trying and Dr for talking sense it really does help to have your input. I think it ll get better as time goes on and i m gonna really try and have a proper break over xmas and let my hair down a bit !! Great news your dhs sperm has gone up and taken the pressure off worrying about not enough for the ivf. I m feel it ll all come together for you eventually Trying (and hopefully sooner than later).

Trixie - welcome and sorry to hear of your struggles, hope your biopsy gives you some more info but with your high nks and raynauds sounds like looking into immune issues is a sensible plan. This is a good thread for support as we have a mixture of immune issues between us, some ttc naturally, others on superov or doing ivf and lots of experience of all sorts of drugs (humira, pred, hydroxycholoroquine, intralipids, clexane etc). Hope you can find the help you need here on this difficult journey.

Hula u deserve to chill out. We al know how consuming this jouney is and I know u prob put more pressure on ursrlf every month due to worries over ur age...but try enjoy Xmas have wine and choc and enjoy time with ur little one :)...no only child's I know grow up feeling resentful or sad at being an only child...its just ur own worries and feelings around it...I know he asks u but he's little now when he's older he won't feel it as u will have given him a loving stable home and that's what counts.

Thanks re the sperm was nice to finally get some good news for once! And was good to see the sperm there were motile and healthy so the force feeding of nuts and make to dh has helped for sure! Taking round 2 of humira tmrw. Really hope I don't flare on it again , feel like I'm making my uterus worse!!! But ill just do as I'm told!

Trixie welcome, sorry ur here but please do join and I hope we can hold ur hand in this journey!

Great news on the so mr front tring,at least that talk so the pressure off a bit too. Hope you're doing ok otherwise.

Hula, it must be so hard to switch off, likes theirs have said after years of monitoring what's happening month after month it just becomes party of the routine ine, I guess it will taken few months to stop thinking that way, you can't just turn it off. I'm an only child and so is DH, and we both had great childhoods, we don't feel like we have missed out at all, and maybe in other way she we have benefited from being the only one. I always said I'd never haven just one (not sure why) but with he process we have had to go through I now think if I do only have one I'd be happy with that based on the fact I had a good childhood as the only one - hopefully that makes some kind of sense!

Thank you for the warm welcome ladies, I feel a bit better for being here. I have ordered the book 'is my body baby friendly' so I can be clued up before my appointment at the clinic. A bit of light reading for the weekend! I've been taking baby aspirin since March and when I read back a bit on the thread I saw that some of you have gone gluten free and avoid dairy so I am going to give that a go.

I actually went to a talk at the Fertility show recently about immunology so will have to dig out my notes. There was one Dr. arguing for immunology treatment and another against. It seems to be a real bone of contention between experts. My Dr. is sceptical about the effects of high NK cells on fertility but will do the treatments. I may well make an appointment for a consultation with one of the experts who specialises in immunity issues - would welcome any recommendations.

Thanks sunny, it s helps to know you and your dh were fine being only children. I m feeling a bit better now, think it was the sudden surge in ov hormones that derailed me a bit !! How are you doing ? You re on the home straight now. Can t wait till it s your turn with good news.

Trixie - i saw a fertility nutrionist who recommended avoiding pro inflammatory foods (gluten, dairy, sugar, alcohol, limiting red meat). It seems difficult at first bit there s lots of gluten free alternatives and many resturants have gluten free menus so its not too bad.

It can be hard with the controversy around immune issues but there are alot of success stories out there and ivf clinics that do aggressive immune treatments do seem to have alot higher sucess rates (zita west clinic which is george ndwuke an Argc are a coulpe i ve heard off). Are you planning another round of ivf ? Have you clinic tested your cytokines (tnf alpha) as i believe these are more linked with delayed conception than nk cells.

Hi Trixie,

One thing I would say is that although immune therapy for RMC is controversial- the controversy mainly lies with how effective it is. I'm not sure I've ever heard anyone say it's in any way harmful. Intralipids are perfectly safe, as are steroids, so worst case scenario- you will do no harm and perhaps at least get a placebo effect. Simply receiving hands on treatment (even without meds) is associated with better pregnancy outcomes for women with RMC.

Thanks for that Hula. I've been trying to reduce my sugar intake for a while now but will try harder, alcohol is tough as I love a nice glass of wine but will make sure it is the occasional glass.

We are currently going through the NHS, my GP said that you can't go on the waiting list for IVF until you've been trying for 2 years so we went private for our cycles this year. We've got some frozen embryos left but funds are low and looking at the long term, especially with the NK diagnosis, we would like to save those for a sibling. I think we are entitled to one cycle on the NHS and we've got our consultation at the hospital in January so I guess we'll find out how long the waiting list is. I'm apprehensive about what the hospital will say re NK cells but I am hoping I can have intralipids (plus any other treatment) done at my clinic alongside the NHS cycle.

Re blood tests I've had quite a few but pretty sure I've not had tnf alpha. I will ask about that when I go to the clinic.

Hi Drttc, that's good to know. The 'against' Dr. at the show was talking about a severe case of sepsis from intralipids but that was surely the fault of the clinic. I was a bit worried about taking prednisolone during my IVF before but I didn't have any side effects. With a possible reason for why our IVFs failed and the prospect of treatment I am actually starting to feel quite positive.

Hi Hula just read your comment about tnf alpha testing and started searching in relation to my rheumatoid arthritis and there appears to be a link. It's actually beginning to baffle me how little I know about a disease I've had since I was 2! But anyway, I was wondering what the tnf alpha's role is in stopping conception? Do you know where I can look or is it best to just have a Google search? Thanks!

Hey panda I have raised tnf. It's an inflammatory cytokine..we all have it in our bodies but U need the levels to be right...and there is very good evidence it's raised in rheumatoid arthritis.

it causes problems with implantation and biochemical losses. When I didn't need Ivf and saw mr shehata mine were normal. However 1 year later and 1 mc later with pred and intralipids a test with Argc showed slightly higher levels and they think that's the cause for my mc. Interestingly my last 2 loses have been my earliest and when my tnf was a problem. (My tnf was only just retested after mc 4 so I'm guessing it was a cause for mc 4 but I didn't recheck them) I've had humira round 1, and my levels shot up but I was also preg but didn't know. They reckon my body doesn't like being preg and reacts to it as a foreign being tnf goes up... and the tnf caused my 5th loss just recently. I suppose I now know my body does this and I'm hoping one more round of humira and intralipids or ivig during a I've cycle will lower it to make my uterus kinder to my embryos!

What's v Odd is tnf doesn't cause infertility to me I have no problems gettin a bfp its just mc . While For others it causes implantation problems. I need Ivf for male factor which only recently developed

Trixie - good luck with the next ivf, hopefully you can get your immune tx alongside your nhs cycle.

Panda - from what i ve read in the alan beer book he says high tnf also damages egg quality and makes the egg harder to fertilise. The immune system is so complex i think there s still alot unknown.

Trying - how are you doing ? Will they be restest you tnf after the second round of humira ?

I'm ok (ish) hula..up and down to be expected...first time I feel ive lost a lot of confidence in my stupid body.....yep retest and if still up I get intralipids until they lower (but only a maximum of 2 rounds) and then they start u and tx u while u cycle. How r u?

Ahh you re very strong and determined Trying. I don t think i could have coped with 5 losses. Hang in there, and at least if you fall preg easily then argc have got the best chance of working to keep you preg esp if you ve done PGD and know the embryo is normal.

I m better now ov has passed and had a smear test the other day and the gynae who did it cheered me up by saying she saw loads of women in their 40s with spont pregnancies and said i def wasn t too old to get preg (and i also didn t look 40 which was nice, hope my ovaries were listening!). So you never know but i do feel better off all the drugs ( am even taking a month off all supplements but will go back on a prenatal next month just in case).

Hi Trying thanks a lot for replying! It certainly seems like if this is an issue for me then it's related to implantation as I've only had a BFP once and that's when I was on medication** for my arthritis.

It's really interesting and a bit worrying how these things change over time. It's like there being activity in that area sparks things off.

I'm only 11 months into this journey and my already exhausted and exhausted with the thought of what is to come!

Where did you have the tnf test done? I assume it has to be private.

Mr shehata , care ivf clinics and Argc will test ur tnf so yes private. They will do that along with nk cells.....I think for people with autoimmune issues and unexplained infertility or mc it's worthwhile looking into, but it's exp :(

Hula, I can't imagine life with no child so I have no choice...well I feel I don't anyways who knows wot I'll say next year! That sounds like a lovely doc and very true. I think taking a break of al the prenatals will do u good to detach from it all...and then u never know wot will happen ;)

Drttc when r u testing?

Hey Trying! I echo Hula in saying that you are so strong... You're going to get there xx

I'm testing Saturday which would be 9dpo. No symptoms whatsoever! I quite like SO though so I'm happy to continue with that until it works. Feel much better being able to monitor my body reliably!

I thought u would drttc ;)
Ok all fingers and toes crossed for u ;)

Thanks Trying :)