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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:
Seekingmiracles · 03/05/2015 10:16

Sasha - Dr S tests for NK cells using a blood test. And I'm pretty sure some women manage to have one (or more children) and the find they struggle to conceive or suffer RM and later find they have an immune issue. If you're concerned the push for test but be warned its not something the NHS test for. Good luck

Hula2 · 03/05/2015 12:13

Hi Sasha, i already have a ds and had a mc last yr. ttc 18mns for ds and now been 12mns since mc. I have high nk cells/ high cytokines and apparently unexplained infertiliy/rmc after 1st child is actually common sign of immune issues. Have you read Dr beer s book Is your body baby friendly. Explains alot and he was a pioneer in repro immunology.

fackinell · 03/05/2015 18:19

Hi all, I've just applied to be tested for high NK cells with CARE. Can I join you please? Currently losing #4 and thoroughly pissed off. We were about to stop trying but can't quite bring ourselves to without checking it out further. All NHS tests are normal but I'm just turned 44 now, tick tock. Confused

Seekingmiracles · 03/05/2015 19:54

Hi Fackin,
So sorry you're going through this crap again. I'm new to the group too.
Have the Nhs put any plan in place or just said to keep trying? I think you're right to test though, there must be something going on. I don't believe in 'unexplained'. It's a crap excuse.
Sending big hugs

fackinell · 03/05/2015 20:28

Hi Seeking, thank you for the welcome. I also don't believe in unexplained.

The NHS are pretty much done with
me. I have bloods again on Friday to check HCG levels but thankfully it seems to be passing naturally. I feel ok, I think but I'm having a few anxiety attacks. 4 babies, a darling cat and a dad (not close as a violent alcoholic but strangely messed with my head) dying in the last few years has taken its toll.

I'm working my way through the posts but what is your story, please? I haven't reached it yet.

Rosa27 · 03/05/2015 21:10

Well lovely pred symptoms kicked in in full force- my face literally feels like the hulk must feel before he bursts out .. I've insatiable hunger, awful anxiety and feel depressed too. Hope- tell me this isn't constant? I don't understand how I've no energy either- thought was meant to get more with pred?!
Drttc - are you testing yet?
Hoping everything else having a good bank hol. My lovely loyal waiter, ahem DH, is back at work tomorrow but I'm still off so will need to be finding energy somehow to look after myself! X

Rosa27 · 03/05/2015 21:19

Sorry Fackin- I only saw this new page when I posted my last post.. Must be issue using on my mobile. Welcome too and so sorry what you're going through. I'm not far behind in age and similar background of loss. It's so so tough but you are in the right place - and if you feel you can't give up yet it's probably a good instinct something is going on that can be helped. There are lots of successes with immune therapy and everyone here hopes it's just a matter of (not too much) time before they get there too. I'm at a really stressful point after failing to conceive with treatment for 7/8 months I'm now 7/8 weeks pregnant and absolutely terrified .. I really feel this is it. Don't have it in me to go through again etc. you never really know until you're faced with a choice though. I hope you get some answers soon and lots of luck to starting a new happier chapter you clearly deserve x

Rosa27 · 03/05/2015 21:20

*everything else - meant everyone else Confused

fackinell · 03/05/2015 23:25

Oh good luck, Rosa!! Smile I really hope this is it for you.

I'm nervous about meds for this as I'm allergic to so many drugs. I have bad anxiety too but strangely was calmer when pregnant. It seems so unfair that I do all the stuff I'm supposed too but still it goes wrong, I didn't even have caffeine. I feel mentally and physically drained right now but then can't sleep. Waking up with adrenaline rushes and the horrors.

Cruelest of all are the baby dreams. They're trapped and I'm frantically trying to rescue and comfort them. That's upsetting and leaves me awake most of the night. I swing from wanting to do anything to have a baby one minute to never wanting to try again the next. I'm very confused right now.

Drttc · 04/05/2015 08:25

Welcome Fackin! So sorry to hear about how hard it's been for you. Hopefully this group will help you as much as it's helped us.

Rosa- those side effects sound sound awful :( It must be a comfort to know you're growing a baba in there though :)!! You're doing it!

I tested today and got BFN :( I'm cycle day 23... If implantation happened CD18 (when I had the spotting) then today I'd be at about 5 hcg. So probably too early to read- but I feel defeated! No symptoms now, so not very optimistic! Hate disappointment!

Seekingmiracles · 04/05/2015 09:09

Facking - I'm 30, 3 Mcs under my belt ( at 5wks, blighted ovum discovered at 6 weeks and another mc at 4+2). Positive for PT Gene variant and high Nk cells. Currently 5+2 pregnant, shitting a brick, paranoid and on a whole host of drugs (clexane, cyclogest, prednisone, aspirin).
Don't give up yet if you've still got even a bit of fight left in you. Def consider seeing DrS, it's expensive but worth it.

Rosa - sorry you're feeling crap now with the steroids. Hulk face sounds hideous! But it'll all be worth it Smile

Drttc, hope you're just testing early and that your bfp is just round the corner!

fackinell · 04/05/2015 10:34

Thank you all for the warm welcome. I hope you all get the babies you dream of and easy pregnancies. I may contact Dr S as well as CARE. The breakdown of costs is confusing though. Dr Quenby is £350 flat fee for consultation and initial drug treatment. Dr S seems to have costs for everything. I can't get Dr. Q's assistant to message me back though. One out of five messages has had a reply. I can't go there for a few months after MC though.

Seekingmiracles · 04/05/2015 12:48

I paid £1800on my first visit Fackin, that was £250 for initial consultation, full immunology tests and factor v leiden. NHS did all my other thrombophelia tests and I took the results with me. It's a lot but i feel like I'm now getting somewhere.

Rosa27 · 04/05/2015 15:19

Fackin- I know what you mean about dreams.. They can be SO vivid! I also considered Dr Q but decided on Mr S as didn't want to waste time and be seemed to also be more thorough and open minded from what I read from others online.
I've managed to get out today which is a huge achievement .., I'm just worried the 'normal energy' means something's wrong as no preg symptoms. And cm seems more so nervous .. Find out tomorrow if nhs will scan me this week. I so hope so as worried about long train journey to see mr S if things going wrong.
Anyway .. Have a couple of Qs I really should know the answers to given how many pregnancies I've had. Hollandaise- ok or not? Hair dye- any safe to use in 1st trimester?
X

fackinell · 04/05/2015 18:18

That's so out of our funding tea hits not even funny Confused oh dear. I'll see what else we can do.

fackinell · 04/05/2015 18:19

Rosa, my symptoms came and went, MW said that was totally normal. Everything crossed for you!!

Rosa27 · 04/05/2015 18:28

Fackinell- you don't have any Bupa health insurance.. Most of first tests covered on that?
Failing that could you get a family/friend loan so at least you're not worrying about interest?
It is bloody expensive .. But ...
In terms of my symptoms I'm just a ball if nerves as between now and 16/5 I've had missed miscarriages signalled my symptoms disappearing. I wish I could be hypnotised to forget the past - it would help!
Hope you find a way to get the tests and treatment you want / need x

Seekingmiracles · 04/05/2015 21:53

Come on Rosa - you know the pred can mask symptoms. Try not to worry....I'm all too aware that's easier said than done though. I'm exactly the same - pretty much zero symptoms. I've been awake since 4.30am and am only just in bed! It's 00.50 where I am!!
How come NHS are reluctant to scan?? I thought it was standard protocol to scan more frequently after rm??
Fackin, I hope you find some way around your issue. If you can't afford Shehata, Quenby is definitely well regarded so worth a visit.

Rosa27 · 04/05/2015 22:38

I know Seeking - I'm worried my worrying is making my immune system worse.. I need an 'off button'!
Where are you in the world?
Pred insomnia is a nightmare isn't it. I get 3/4 hours max .. Can't wait to get off this .. Though ideally weaning from 12 weeks not before. Hope you have a better sleep tonight x

fackinell · 04/05/2015 22:44

No, NHS only. I'm SE so no private care through work etc. I will look at Dr Quenby but a bit annoyed at Kerry for her no replies to my calls or emails. Hmm

Rosa, I know what you mean about wanting to forget the past. I just kept thing that it is what it is and I know that sounds harsh but it worked for me. It was going to work or not for me and sadly it didn't. If Pred masks the symptoms it's probably that in your case.

Everything crossed for you!!

suemays · 05/05/2015 00:23

sasha I had dd in 2008 with no problems conceiving or in the pregnancy and then went on to have 10 miscarriages over 4 years afterwards. The nhs were still trying to tell me that it was a co-incidence and due to bad chromosomes/my age even though I tested high for nk cells with dr s. The only 2 successful pregnancies I had after my dd were on the immune treatments! Dr s told me that my dds pregnancy caused my immune system to go into over drive. The nhs doesn't recognise killer cells in miscarriage!
rosa my symptoms came and went apart from the awful tiredness. The pred didn't give me loads of energy as I was asleep by 8.30pm most nights plus needed an afternoon nap too. In Chinese medicine its good to rest between 4-5pm if you can whilst in early pregnancy. I didn't use any hair dye as I know dark ones can be dodgy is early pregnancy so us bought a hair make up called colour wow which hid my roots until 12 weeks. I was really careful with undercooked food as lost a pregnancy due to food poisoning so didn't want to risk it again.

Seekingmiracles · 05/05/2015 05:35

I'm currently in Dubai on holiday (great timing!) but I'm determined to try to enjoy it. Lots of water and the parasol are my best buddies right now. Back Saturday and to be honest I can't wait!
I had to colour my hair - my roots were so bad as I left it so long before holiday, then found out I was pregnant!! NHS said its ok. Hope it is...oh god - something g else to worry about!

SashaKerr · 05/05/2015 10:36

This reply has been deleted

Message withdrawn at poster's request.

Rosa27 · 05/05/2015 10:47

Thanks Suemays... I will be careful from now on. I love eggs Benedict!
Have also ordered colour wow. The stress and also hydroxy has left my hair greyer and thinner - not fair all this makes us uglier too. Will hopefully all be worth it!
The tiredness is a nightmare. Though I am still awake until 11 I'm staying in bed working via blackberry. Getting a sore back though!
Seeking - enjoy the holiday! And don't stress about anything. If only I could take my own advice! I bought a book yesterday which is really interesting called The Autoimmune Epidemic. It's £2/3 inc postage from Amazon and worth a read. X

Drttc · 05/05/2015 16:42

Wahhh! Absolutely horrible day, and I'm wallowing in self pity :( . Was stood up for a work meeting I worked really hard on, walked home in the pouring rain, got a BFN, and found some brown spotting with a bit of egg white cervical mucus. What the heck?! It's cycle day 24 and I'm due on day 26. I'm worried my body hates me :(