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

Hiya guys - thanks for the welcome.

Snoopy if in any doubt at all I would recommend just going in to the hospital, your baby is 24 weeks and viable so they would take you seriously and put you on a trace for 20 - 30 mins. They will be able to tell that all is well.
When I was pregnant with my daughter I went in three times to get checked (I used a kick bracelet) and it was worth it for the reassurance. I did have a Doppler for heart beat before I got consistent movement but after then I went on movement mainly. I didn't get consistent movement till 26 weeks btw. At 24 weeks movement can still be sporadic but if in doubt head on to the hospital. You aren't wasting anyones time and the midwives defo wouldn't think that. All will be fine. xx

I have my first scan on Tuesday and I keep googling "no Symptoms" although I do have mild of everything. They say prednisolone masks symptoms and each of my 4 previous pregnancies (of which 3 mc'd) all my symptoms have been different regardless of the outcome. But still I cant step away from the google. OOF!
I am also on clexane and its brusing the hell out of me. Is anyone else on this?

I just wanted to post with my success story. I started off on this thread few years ago. After 3 miscarriages with third one under Mr S, I moved to Dr G. I finally gave birth to my miracle baby this month after 3 years. So please don't lose hope, you all will eventually also win this fight to become mothers.

Thank you so much Firsttimer08! We really appreciate hearing from women who have made it through this incredibly difficult time. And Congratulations!!!

Tumtimes1 good luck with your scan. I was on the fragmin injections for a few weeks and it was brutal... My stomach looked terrible and all black and blue! Did you say you have mild symptoms? I only started feeling nausea around 6 weeks and it was very come and go. Also I agree that it that Dr S and several woman on this thread say prednisone has masked symptoms- I think it was unusual that I had them tbh!

Hey guys!

First timer thanks for ur story! And congrats ;) can I ask what mr gorgy found and what tx u had? He's a bit more similar to Argc so am intrigued! Infact he was the medical director at Argc and then left to start his own place so similar theories and tx. Of course this itself is fairly similar to mr shehata plus a few tweaks.

Snoopy I'm sorry ur so worried, the others r right. Just go in. I'm sure everything is totally fine but u can't be feeling so anxious it must be awful. Just get urself to the hosp and then have a relaxing night.

Thanks girls, I know ur right. I just feel like everything is going wrong!!! I'm on a Argc thread too on another site and loads of women contacted me to say their tnf was also high on starting and they had similar histories (either many failed cycles and or mc) and they got lucky. They said while I cycle I'll prob have ivig which is the strongest of all immune drugs and will hopefully knock the tnf to the floor!!! It's hard to stay positive though but u all know wot that feels like!! So to make myself feel better, I'm having a glass of red and a coffee today! I've not touched a drink since Boxing Day and not had coffee since New Year's Day so I'm having a treat! I think I will cycle still in Feb but I'm just awaiting the phone call to confirm the plan! And yes rosa I rem ur tnf was high and u couldn't have humira either. I suppose I just need to find the right cocktail of meds that works for me. I just hope it's soon, 5mc is 4 too many!!!

Billy, sorry the big m was mentioned. It's hard not to start getting away with ur thoughts thinking re donor eggs etc....but just take one step at a time. Get ur bloods done and hopefully they r fine, u r right they fluctuate a lot. U have a had a lot of pregnancies recently so u can't be that close surely?! I think the medical professionals don't realise that saying one word to us can have such a profound effect even though it's prob the last on their list? He was prob thinking out loud.The word surrogacy was mentioned to me in passing and I must say its had a huge effect. I try shake it but really since it was mentioned I can't seem to get it out my head!

Have happy weekends! Can't wait for my

I meant
5mc is 5 too many!

Thanks all.

Trying - I actually consulted Dr Braverman in NY and then Dr G followed his protocol. I was recommended IVIG as I had some antibodies issue (which IL cannot deal with) but I had to abandon Ivig due to an allergic reaction. My pred was increased to 60mg at one point and then I did Intralipids as a precautionary measure even though it wasn't required. ARGC monitor your immunes through pregnancy so you will be in good hands.

I also did IVF with PGS - even though I did not have an issue getting pregnant - to avoid chromosomal issues after taking so many meds?

I had secondary recurrent miscarriages due an HY restricting allele which attacks any pregnancies after first born male child.

Btw on TNF-a my traditional measure was raised and like ARGC Dr G recommended humira. But I didn't take it as Dr Braverman said that this was the serum rather than intracellular measure for which Humira is not needed.

Thanks so much for that first timer. Really appreciate it :)

I think I prob need ivig as I've had intralipids twice now in preg and still mc. Argc are quite pro ivig...but they use lower pred doses. 20mg. Wow 60 is nuts!!!

And yes I'm doing Ivf with pgd as I need Ivf anyways due to male factor so throwing it in. Ive been told at age 31 it's prob not chromosomal but who knows! I just can't go through it al again and wonder if its chromosomal

Thanks for taking time to let us know ur journey :)

And also my tnf is being stubborn so good to know that it's not seen as the be all and end all!

trying you deserve a big glass of wine. And a huge slab of chocolate.

I'm sorry everyone seems so stressed today.

I went to the hospital and they listened with the Doppler and they said everything was fine. I'm so anxious I just don't know what to do with myself half the time

Perfect snoopy. After what u have been through its natural to be anxious. Ur little one is fine :) and not long to go till I meet her X

Oh u meet her! I would also love to meet her
Hahaha

Haha thanks trying. I hope you'll be meeting your little one soon. Wasn't there a lady called sasha who posted here briefly who was going to have ivig? But I think she was going to the lister.

So another weekend on my own because they keep changing dh's shifts at least I have you guys.

Hi Firsttimer, thanks for popping by with your story of success. Sometimes we all need a little reminder that miracles do happen. Congratulations on the birth of your little one

Trying, stay positive hun. I know you're going to have your own success story soon enough. Enjoy your naughty little treats! You've done so well and be so determined. Sometimes we all need a little treat!

Snoopy glad you got yourself checked out and all is good! Don't be afraid to get yourself checked at point you're having a worry. If it puts your mind at ease then it's well worth it. You've been through so much and come so far! Hope your weekend isn't too bad with DH at work.

Thanks guys, ur all lovely! I enjoyed my vino ;)

Didn't hear from Argc was told Monday now. I really want my start date confirming its so so hard cycling with them at this stage u just have to go with the flow but it's so unsettling! From my understanding I'll be given one more intralipid next week and then started but the odd lady has had 3 intralipid before starting but me and dh just can't wait any longer due to work etc.....so in my mind I start in 10 days! Would like it confirmed though!

Hi everyone, I posted on here back in December when I had been diagnosed with elevated NK cell levels. I received some great advice on here and have cut right back on sugar/alcohol/gluten and have been taking omega 3 fish oil supplements every day.

We're due to have IVF in the Spring on the NHS and wanting to have immune treatment alongside it I made an appointment to see an immunology specialist. Bit of back story- we had a fresh and FET IVF last year privately which failed and had NK levels checked out with our clinic, the Consultant there said they can do intralipids before transfer and prescibe prednisolone, however they're pretty on the fence with the whole immunology/fertility issue and I figured if this is the reason we've not conceived then I wanted to see someone who specialises in immunology.

Anyway, had a consultation and feeling more confused than ever.
I guess I was naively hoping the specialist would say that my levels aren't that high and give me a treamtent plan based on that but he has said we need to have further tests first. The tests are expensive and I'm wondering how important it is that we have them all.

The tests are;
TH1;TH2 cytokine ratio - from what I understand this one is pretty important so we're organising this.

Chromosome Karyotyping - we have our NHS consultation soon and are planning to ask about PGD so would Karyotyping just be a waste of time?

The third one I wrote down as KIRS - a semen test to check for fragmentation. However when I e-mailed the clinic to arrange the tests it turns out this is a female test. I have tried to clear this up with the clinic but they've not been particularly helpful.

We're feeling pretty confused, on the one hand I'm tempted to just have the intralipids/prednisolone with my previous clinic- I feel comfortable there. On the other, I feel like we should have the tests above and another consultation even though it would set us back a bit.

Also, I read that the more times an immune reaction happens the worse it can get. DH and I used condoms this month which feels weird when TTC but so far I've not had the cramping I get in the lead up to AF.

Sorry, this is really long but we're feeling completely lost at the moment and any help would be much appreciated.

Hi trixie. Sorry re ur failed cycles

I don't know anything re kir.

Th1/th2. Looks at ur tnf. If raised tx is humira and or intralipids and or ivig. Depending on ur clinic. It's a bit like nk cells as it's an immune issue which can cause recurrent implantation failure and mc. Again like nk cells is controversial and not got much reserch but some clinics and docs believe in it. Mine are raised and I'm being tx for this before I do my next Ivf cycle.

Karotype will show u and dh have the right no of chromosomes and will check if any missing parts of chromosomes or extra parts (crudely). If there's an issue with karotype pgd is way fwd and nhs I believe funds that (I don't know details). Im not sure sure but I don't think pgd can pick up on extra and missing parts of chromosomes. Only the total number. So if u and dh had this issue (which is rare) then not sure if pgd would pick it up on the embryos . But check with clinic

Hope that's helps! I'm having Ivf and have mc and now with Argc. I've had the above apart from the kir. It's hard to know wot to do/and which tests to not run. what I have done is go with one clinic and follow their protcol 100 percent (but ask a million questions and worry I should be doing more!!!). Then when I fail I go for another approach and more tests. Sometimes I wonder if I should just do it ALL but it's get confusing mixing clinics and different options on what is already so controversial and without much evidence! Hard to navigate ur way through.

Hope u find ur magic combo. Al the best X

Ps there is a semen fragmentation index test too. I think there is decent evidence for this and I wanted it done and was advised by Argc and a top urologist to do it. But we didn't have enough sperm to run it! We were told dh should be on high dose vit e and vit c as if there was a fragmentation that would be partttt if the tx. If ur making good blastocysts and they develop fast I was told crudely that fragmention less likely to be issue but obv this isn't a rule and we were told this as we couldn't get our tested. So urologist said his feeling was given our good blastocyst rate he felt it probbbb wasn't an issue!

Thank you so much for the info/advice trying, that really helps.
We had slightly low fertilisation at 8/15 but 7 of the 8 made it to day 5 so hopefully the sperm fragmentation isn't an issue. May get DH on the vit C and vit E just in case though.
I'm not sure how I feel about the humira and IVIG and I think I'd want to just try Intralipids and prednisone first and see how we get on. I'm going to have the TH1 test this week and then ask about karyotyping at our NHS appointment next week. Our original clinic do karyotyping via their Prague clinic for less than the FGA (I went to see Dr G for my consultation) so if we can't do it on the NHS then we may go there. Though like you say it gets confusing having more than one clinic involved. It's like having an extra job dealing with infertility!
Do you know when you'll be starting your next IVF? I thought immune treatment was done at the same time as IVF treatment, I didn't realise you may need to have treatment before.

Hi trixie
It depends what issues come up. If it's tnf u need tx before I've been waiting since October to cycle as my tnf is misbehaving and I had a natural bfp Inbetween. But if it's just nk cells u usually have intralipids just before stimming and then during u have more with steroids!
Good luck X
Ps 1000mg vit c and 400iu of vit e. Crazy doses.
Pps fertility friends has much more Info on Ivf and immunology than mumsnet. There is a while fga/gorgy thread!

*whole

Hello Ladies,
Im a newbie here and was hoping for some success stories or advice. DH and I have been TTC for almost 5 years, I have never had bfp naturally or with 3 IVF cycles. Recently i saw Dr S and got diagnosed with very very high NK cells, infact he said it was the highest he had seen in a long time
CD69 - 2.64
NK Cell cytotoxicity: 42%
NK Cell absolute count 246
This would explain why I have never conceived, I had an intralipid 2weeks ago and have been put on 25g of predesolone for 2 weeks to test if my bloods have had a positive reaction. Has anyone had a levels like mine and gone on to have a success birth or are my levels too high and should accept that there is no hope.

Hi Sonia, I'm really sorry to hear you've had such a difficult and long struggle. I'd never say to give up hope though. What did Dr S say? I would think intense immune therapy such as the intralipids, hydroxychloroquine 2x (really helped me), and steroids would certainly help. Also, there's IVIG which are supposed to be even stronger (but very expensive). You never know how well your body may react to treatment. Maybe even some lifestyle changes? I went gluten free as I believe that has an impact. Stress may also play a role in elevating NK cells and I have no doubt 5 years of ttc will have done a number on your stress levels. NK cell levels can/do change over time, and I don't see why this couldn't happen for you. I'm guessing you've tried acupuncture and other relaxation techniques to help with this? It's nice to have 'me time' during this painful journey and I believe it helps psychologically healing at the very least. As a last resort, if you're absolutely committed to only biological children, and your IVF cycles are producing good embryos, there's gestational surrogacy. I've heard that it works very well if the only issues are immune related in the mother. This was quite a general overview of things but we'd love to welcome you into the group and learn more about you- then try to help & support as best we can!

HI Drttc, thank you for your response. A little bit of background history, I have tried acupuncture for two of my ivf cycles, my last job was quite stressful fortunately I have a new job now and my boss/friend is the one that suggested I se DR S as his wife has similar issues so he is extremely supportive. I am only a month in my new job so who knows this could be the factor that changes my stress levels. I will get my results back on the 22nd of Feb so will find out whether I need Ivig or a more itralipids. I guess of all else fails then surrogacy is option I can explore.

Hi Sonia, no problem! It's important you know you still have so many options! I think acupuncture on a regular basis is good for stress relief so something to consider. I usually fell pregnant first try, then had a 6 month spell where I couldn't fall pregnant. I did six sessions of acu and finally not only got pregnant, but this is my first viable pregnancy to progress (12 weeks tomorrow). I previously had 4 chemical pregnancies in a row. I can honestly say acupuncture changed how I felt and made me a calmer person. Glad to hear about your new job and really hope this is a turning point for you!

Thanks Trying I hope that your tnf starts behaving itself and you can start treatment soon. I will check out fertility friends. May well come back and join the thread properly when I start treatment if that's ok. Best of luck to everyone in the meantime.

I start down regging on Monday! finally!!!!!
God please let this work! Pleaseeeeee!!! Having another intralipid on Friday and then Monday I begin!

Drttc I can't bel u will be 12 week at s flown. Yet for me time has stopped still! So happy for u. Are u going to find out gender???