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Immune / natural killer cell treatment when ttc or pregnant (aka the 15th pred thread)

991 replies

sunnyday01 · 06/02/2015 20:10

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

OP posts:
Tryingno1 · 13/05/2015 21:07

Hi determined. My ivf place does steriod and intralipds not ivig. But argc in London and mr gorgy does ivig. If u look at ur NK cells it says how much ivig/steriods and intralipds bring down ur nk cells. As long as the steriod and intralipds bring it down enough to normal levels u don't need ivig.

Clexane-quenby uses this so if u lurk on the miscarriage thread a lot of them are on it. I'm being put on it due to a mutation found (only my clinic test for it as they discovered if I'm not convinced if it's real or not but I'm going with it). but my consultant also said it helps build the placenta and make it stronger (but in more medical words!).

I don't think anyone really knows in this world. U just have to hope for the best! It's all so confusing.

Determined123 · 13/05/2015 21:42

Thanks trying...I haven't actually got my second tests results as left it all with Dr s as going ahead with more tests is not an option at the moment. (Told over phone) The ils and steroids didn't bring mine down enough unfortunately...I'm don't think I can do ivig as it doesn't feel right, guess I'm trying to work out if it's my only option?!

Some days I don't even know if it is even real!!

Tryingno1 · 13/05/2015 21:51

I know it's so hard! I think now that ur getting closer to ttc ur thinking everything through again! It's enough to drive us all mad! I'm trying to not think and just trust my specialist! (But have obsessively googled last week even though I said I wouldnt!)

Rosa27 · 13/05/2015 23:10

Hi Determined - my thyroid antibodies were 320-something. TSH was 4.2 and 50mg brought it to 1.6.. Not sure what the antibodies are now. Can double check if you need exact.
My intralipid and pred combo was best at bringing everything down I think. Would love to repeat that Mr S appointment again when he went through it all now my knowledge is a bit better actually.
Hope you get a plan you feel good and confident about soon. The uncertainty and limbo state is one if the hardest things.
I don't feel I've the right to be sad right now but am struggling quite a bit- have a really painful lower back and had lots if pains in groin area as well as where I think I've cysts. Over did google again and just not sure if should be worried. Next scan Fri and if all ok will do Harmony bang on my 10 week mark. No idea how worried I should be about results as know my age ups the risk from the start.
Hope - if you're about .. Where did you get Harmony done and when?
Hope everyone else ok x

Seekingmiracles · 14/05/2015 07:45

Had more brown discharge this morning, it seemed to tail off a bit and now it's definitely darker. I'm absolutely terrified. Why can't things just be straight forward.
Seeing Dr S tonight - I'm so scared he's going to tell me it's all over.

Determined123 · 14/05/2015 10:32

Thanks ladies, very useful. My tsh had gone down so that's prob why I don't need it (1.8 and 1.5) antibodies were 700 and now 300 so I feel the changes I have made have worked! Just these damn nk cells not really going down with il and pred! Oh well!

Seeking/rosa know there isn't much I can say but try to distract/stay positive! It's so so hard though I know xx

Rosa27 · 14/05/2015 10:57

Seeking - so sorry you're in this position.. I know it well. All I can say is sometime my fear has been confirmed, but not always.. You just don't know until a medical professional can confirm so I'm so glad you're seeing Mr S tonight. You have to think IF all is well, then your baby will be happier if you are. I find music can help reset my state of mind .. Even classical like pacobell?
Take care and let us know what he says. Will be thinking of you.
Determined - that sounds good.. I know for TSH it just had to be under 2. But those damn NK cells as you say.. What a shame the usual drug combo isn't cutting it. Hopefully another will.. What's the next step for you?
I've just had my other arm punctured today for blood tests and hanging about to see a doc about my back as still sore to walk. Today is when my growth stopped with my longest pregnancy so v glad I felt a small wave of nausea this morning - scan at 0830 tomorrow so really hoping this is different. X

Determined123 · 14/05/2015 11:16

thanks Rosa..god why is this so traumatic for us - so unfair!

good luck for later seeking - I have everything crossed for you!

I have no idea about next steps...ivig just goes against all that I stand for...I worry about it not working and spending the money and long term effects and other auto immune issues...no point getting a family that I am too sick to look after. I haven't been specifically told I need it, just that the third test is to try and avoid me having it...but if the lab results are saying it I am pretty sure my body will react in a similar way!? Sorry im rambling....

xx

Seekingmiracles · 14/05/2015 13:04

Thanks ladies.
I've had acupuncture this morning and feel a lot more chilled. I just wish I could stop my brain from thinking. I'd like to just sleep for the next 6 weeks and wake up and all is well.
I feel like I'm going to need t be scanned weekly for my own mental health. After today I've got a 2 week wait until my next!
Determined I hope you and the Drs find a way around your pesky nk cells that doesn't require ivig. My acupuncturist is always on about the power of medicinal mushrooms to calm the immune system - I know it can all sound a bit mumbo jumbo but I guess it's worth a shot. She told me to get mushrooms (the fancy varieties) into as many meals as poss.

Determined123 · 14/05/2015 13:56

Seeking can you download a hypno cd to your phone/iPod I started and it really helped...has a break and boom, here I am stressed and in decisive again!

Glad you feel better tho!

Yes I've heard about those (reishi and cordyceps??) my only concern is this whole boosting immune system versus modulating it!! I read blueberries and black pepper increase cytocicity and had to have a word with myself that that isn't the cause of my miscarriages! I feel I'm turning into a nutter Smile xx

Hopender · 14/05/2015 13:58

Hi all, just popping in to say hi and that I'm thinking of you all. I'm now 29 weeks which feels pretty crazy. Just hoping everything stays ok. Not that long to go.

Also wanted to let Rosa know I had the Harmony test at 11 weeks. I chose to find out baby's gender this time so Dr S ticked the box for that. Felt pretty bizarre finding out so early, exciting too though! Do you think you will find out gender?

Seekingmiracles · 14/05/2015 16:02

My acupuncturist said they're more for rebalancing/calming rather than boosting. So from how I see they'd be perfect for those of us with nk issues. Im def going to look into some kind of hypno ... I need to switch off from all this. It's so hard isn't it.

Glad you're doing well Hope! Oh how I wish to be in your shoes and be able to relax even if it's just a little bit. Going to the loo has become the most traumatic experience! Hmm

Rosa27 · 14/05/2015 19:03

Great to hear all still good Hope! Sent you a personal message too with couple of Qs most of which you've answered.
Seeking .. I share your trauma.. The loo, cramps, no cramps, no nausea. I'm finding everything overwhelmingly, exhaustingly traumatic... Need to revisit the hypno stuff too!
Determined - I also can't get my head around boosting and modulating the immune system .. So complex! X

Rosa27 · 14/05/2015 19:04

Ps Seeking - how did it go with Mr S? Thinking of you x

Seekingmiracles · 14/05/2015 21:30

Well baby has grown to 6+1. According to NHS scan I should be 6 exactly today. But heart rate wasn't as fast as he'd like and he said the brown discharge was a negative. Still very much touch and go. He said stay positive though and that we shouldn't give up because he hasn't. Just got to jeep taking the meds and hope for the best.
I need to rearrange my NHS scan to next week and then see him I two weeks.

Rosa27 · 14/05/2015 23:15

Oh Seeking.. Such tough times but be strong and we will all hope and wish your wee bean pulls through. It is surely a good sign baby is the right size. And many people get brown and have healthy babies.. I really hope I'm one of them. Don't forget the hypno apps and music and hope you've good support round you during this limbo time. Take care xx

Seekingmiracles · 15/05/2015 06:47

It's so tough. I did have a listen to meditation yesterday for the first trimester which kind of helped. I've got my intralipids today so hopefully that'll work some magic. Is it really too much to ask for a smooth journey after all we've already been through?
Thanks for your support ladies... One day at a time... X

Hula2 · 15/05/2015 09:12

Seeking - keeping everything crossed for your little bean. You re on tx and baby has grown so hang in there.

Rosa - hope your scan goes well this morning. Thinking of you.

Tryingno1 · 15/05/2015 11:43

Seeking so sorry to hear ur in limbo. But Mr s knows best, if he didn't think there was hope he wouldn't say that. I hope the intralipds tell those NK cells to piss off and protect ur growing bean. Have u got
Something planned for weekend so u can try relax (obv impossible I know)
Rosa how was scan?
Hula are u having ur levels checked again now u have taken 2 humira?
My ivf drugs arrived! 2 whole boxes of injections Confused
Started my pill today to bring on my period with a hope that in 2 weeks time I'll be starting my injections. I've started a high protein low carb diet and stuffing myself with nuts and avacado with a hope that helps. Also just had my last coffee for a while! Feeling a bit excited but mostly cramping myself if this doesn't work. Not sure where I'll be and how strong I'll be to keep going. I'm booked in weekly acupunture as I find her amazing and also downloaded the my headspace app-u get 10 free days and it's quite good at helping me zone out if u guys want a try too.
I know my journey is totally diff to all of urs now, but hopefullyu don't mind me still occasionally posting as I feel like I know u guys!

Tryingno1 · 15/05/2015 11:44

Crapping not cramping!!!

Seekingmiracles · 15/05/2015 12:50

Thanks Trying. I'm hoping the intralipids do that too! Piss off nk cells!!
I'll be keeping everything crossed for you too - I hope this is the beginning of your happy ending! We all deserve some happiness! Your journey may be a little bit different to ours but your also still on the same path. Stay with us. We'll try to keep you sane, lift you when you're feeling down and encourage you when you need it.

Determined123 · 15/05/2015 13:23

I am so excited for you trying! It's a new start (even if scary) and we are here ;)

I've used headspace too-highly recommend!

I'm telling your nk cells to do one also! everything crossed for you xx

Tryingno1 · 15/05/2015 13:27

Thanks guys! The box of drugs were rather overwhelming! Should all be done by my 31st bday, last 2 bdays have been pooed on by miscarruage sadness I hope this time I'm a bit happier and not reeling from a failed ivf cycle!
Seeking when is ur next scan?
Determined enjoy ur last few days of freedom before u get onto TtC wagon are u gonna do SO again

Seekingmiracles · 15/05/2015 14:11

Got a scan at my local epu on Thursday and then seeing DrS on 28th.
I hope this birthday is a little bit happier for you Trying. Be thinking of you. Hoping all works out.

Determined123 · 15/05/2015 14:24

Yes I hope so too Trying :) you deserve a good one this year!!!

Ive no idea...I guess I am going to have to with my late ov, short luteal phase (7 this month...STEADY) and lack of a decent period...perhaps SO has got me in this mess!? Only god knows!