NK Cell Treatment after 8 recurrent miscarriages - what are the risks??

[BettyHB]

Hi all

8 miscarriages later, it has come to light that I may have elevated NK cells. We have 2 healthy children already, so this has come as quite a shock. Awaiting a endometrium biopsy next cycle which will determine more. Consultant feels high or not I will need steroids, intralipids etc for next pregnancy. Can I ask what the side effects of these, particularly the steroids, are? I'm really nervous about supressing my immune system with steroids as I am scared these NK cells are protecting me against something now and the poor embryos are destroyed as a result. If this is the case and I go on steroids am I opening the door to something flaring up during or after the pregnancy? Also, if all went well, when I would come off the steroids then would the NK cells attack the baby anyway???
I apologise for the maybe silly nature of these questions, I am just SO scared now of everything.
Betty xx

[Snoopysimaginaryfriend]

Hi betty I'm so sorry to hear of your losses.

I had three miscarriages and I'm now nearly 28 weeks after treatment for nkc. I went to dr Shehata, I presume you're with professor quenby?

With regards to the steroids I personally experienced side effects but they were not too severe and I would happily go through them again if I had to- insomnia, bad skin, increased appetite, on the plus side it seemed to suppress morning sickness.

There's a group of us all going through nkc treatment on the conception board, come join us!

Good luck

[Snoopysimaginaryfriend]

Oh and you would start weaning off of the steroids about week 12, when baby is strong enough that nkc won't affect it.

I'm just on vitamins now

[Frank85]

I was treated for raised NK cells which is linked to my endo which they now say is an auto immune disease basically means by body was working super hard to get rid of the endo
Im going be honest the treatment made me feel like shite, the steroids made me shaky and dizzy. The first intralip made me feel like I had flu but the rest were ok
The humira injections to bring down my NK level count were pretty grim again made me feel fluey .
Would I do it again? Yes I'm 34 weeks pregnant and I may never have got this far without the treatment

[Frank85]

Also after 12 weeks I was weaned off the steroids (if they do 2 quickly u can be rather sick from the withdrawal) then has intralips every four weeks till 20 weeks then nothing and all absolutely fine

[Seekingmiracles]

Hi Betty,

I'm also under Mr Shehata for high Nk cells. I'm on prednisolone and intraplipids at 6/7weeks.
For me the benefits far out weigh the risk! I totally believe that without this treatment the chances of me carrying beyond the first trimester are slim.
I'm only 5+1 so a long way to go but I'm willing to try anything after 4 miscarriages.
My last pregnancy went so much further than the others and that only ended because of an abnormal chromosome issue. If the chromosome issue hadn't been there I genuinely think that baby would now be here. The steroids haven't give me any nasty side effect - except waking very early!

Ultimately only you can weigh up what you're willing to risk/try. But there is ALOT of success out there with steroids for high Nk cells. Good luck

[BettyHB]

Hi girls,
I'm so happy to hear your positive stories and I really appreciate your feedback.

I suppose my 2 biggest concerns are firstly why the hell is this an issue now after 2 kids? Is it all an auto-immune that started since the girls were born? I did have nasty pre eclampsia on my second child.

The other issue which I feel will haunt me is if I go on steroids will it reduce my immunity down to the point where other dormant medical conditions might rear up? For example I've had cin 3 abnormal cervical cells twice. Treated successfully and normal smears since 2010. I am so scared that any deliberate dampening of my immune system will allow this to recur. My sister also passed away from cancer in recent years - non hereditary melanoma.

I jusr never thought pregnancy would bring so many issues up, especially after 2 children.

[Seekingmiracles]

You will only be on the steroids for a relatively short while so i don't think long term it will increase your overall chances of getting something nasty. It's not going to 'make' you get cancer, although I can perfectly see why you might be worried. Sorry to hear about your sister
Who knows why after 2 normal pregnancies you now have high Nk cells... Perhaps they were slightly high before and your children are little miracles that you never knew. Even without treatment there is still a chance that women with high levels can get/stay pregnant, it's just a relatively small chance.
Good luck in which ever decision you make.

[mnpeasantry]

Hi,

Sorry for your losses. It sounds exceptionally rough.

After two mc, I sought private help and found Dr Shehata. He and his team have cared for me through two pregnancies (currently 30 + 2 with DC2).

The steroids had a huge impact on my appetite. When I weaned my appetite dropped like a stone. The intralipids are a bit of a pain to have every four weeks especially when you have other children and care to organise. In terms of long term health, I honestly have no idea. I didn't get ill during the first 16 weeks when I was on treatment. Now have gestational diabetes but no clue if there's a link.

My experience was positive and were I not done with being pregnant, would absolutely go it a third time.

Best of luck OP

[BettyHB]

Hi girls. Thanks so much for your feedback and really good advice on this. I'm normally quite a rational person but I actually feel really spooked about embarking on another pregnancy. Something in my head went off after the last miscarriage and I really felt dodgy about ever trying again let alone going down the road of supports and meds. In saying that I know in my heart that I truly can't walk away from the table on this one. I know personally of 1 girl on the above treatment plan and it has worked out and is again on her second pregnancy. I suppose I feel very worried as to why the NK cells are gone nuts now but as as you said Seekingmiracles maybe our 2 girls are little miracles who got around it or maybe it was not as severe an issue. For that I am so grateful. Now I can't get much past basic implantation so something has to be done, I don't think I would risk taking a chance on the natural route again. Maybe deep down I've been looking for reasons to not try again, self protection?? Maybe..
Thank you for your help again xx

[Wie17]

Hi Betty hb just wondering if you had any update I have had 13 miscarriages with high nk cells and wondering did you ever have success and what was the treatment?

[Sunshinelove8]

@BettyHB do you have an update ? I’m in a similar situation x

[RWK29]

@Sunshinelove8 Sorry you’re having a hard time ❤️ I don’t have any experience that I can share but I follow a girl on Instagram who is very vocal on her journey with high NK Cells and treatment. She’s currently on (I think) her 5th pregnancy After suffering 4 miscarriages and is due twins in the next few months. mrstorcook is her username if it’s something you want to look at 😊