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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 · 21/05/2015 16:51

I'm the same as you Drttc, I firmly believe that I'd have eventually got to the point I am without treatment it was more a case of damage limitation, giving myself the best possible chance and the fact that one rally and emotionally I'm not sure how many mcs I could go through.
I think I'll avoid the Doppler, I've heard they can cause unnecessary stress if you can't find the hb etc.

Fingers crossed for you in a week then, but like you say when it does happen you'll be over the moon regardless of if that's this month, or next.

Tryingno1 · 21/05/2015 17:03

I also agree! So many women have no tx and are fine. Ive read of a few women in mumsbet who went solo and no tx as they got fed up and have babies! Infact one lady I was following has 2 now! And her NK were crazy high!?
I think as long as we r strong and keep going we will all get there..it's just a matter of when! (I hope this is true!)

Seekingmiracles · 21/05/2015 18:28

Just re-read my post.... Blush Bloody auto correct!
mentally not one rally!!!

Hula2 · 21/05/2015 20:10

Well ladies got my post humira cytokine results and looks like i m in the unlucky 5% that go up not down Sad. Now 34 was 32 so at least not a huge flare but means another 800 quid on two more humira. Strangely enough i wasn t surprise and kinda of just knew thats what had happened. Oh well gotta just plod on, and they reckon it still works evevn for those that flare. Bloody hope so Confused !!! Af due tues so will wait till then just in case....

Anyway still loving on the good news here, keep it coming ladies !

Tryingno1 · 21/05/2015 20:46

Oh hula im sorry to hear that. How r u feeling? Are u still ttc?
Rem as we said we are all commited to the tx but also it seems to work for some without so just keep going! I hope ur ok xxx

Hula2 · 21/05/2015 21:28

Thanks trying. Yep still ttc as now they advise you to keep trying while taking it (thankfully as i don t have time to hang about) I m ok tho seems everytime i try something it doesn t go as planned (steriods screwed my cycle and humira made my levels go up!), was planning to give SO a go and now wondering what ll happen with that...anyway don t want to be a downer, if the worst news on here is my cytokines going up then i m happy with that as long as all keeps going well for our lovely pg ladies.

How are you doing ? You must be starting your cycle any day soon ? Have you got time off work ? I bet its hard not too feel overwhelmed, i think for all of us, wherever we are in this journey its just head down and take it day by day.

Rosa27 · 21/05/2015 21:40

So sorry Hula .. Rubbish news :( I don't know if you remember or even knew, but I only had the first Humira shot as had an allergic reaction to it. I paid again to get bloods tested to see how the one shot had affected me - it had only taken me from 40 to 38. So I'm at this point without cytokines being treated further.. Though not entirely sure if pred, intralipids, or anything else helps.
Stay positive - I'm sure that helps, hard as we all know it can be! Xx

Tryingno1 · 21/05/2015 21:40

Ur not being a downer at all. We all in this together for the ups and the downs. Glad can keep TTC, rosa had high levels too but couldn't take humira and look at her now! and SO obv worked for her too. So maybe it's worth giving it a go?? Saying that sunny got preg without trying but took 5'months on SO-so who knows!? If it's meant to happen it just does...

In ok actually, feeling postive and ready to go! I'm on the progesterone pill and metformin at the moment. Ones progrsterone stops on Sunday, I can expect a bleed 2-4 days after and then literally the injections start and within 2 weeks it's all over! So actually it's not that bad...ive taken off time for when I guesstimate egg collection will be - as ive heard its a bit sore for a few days (they collect about 15-25 eggs if all goes well in my age group!). But other than that I don't think I need much time off as I'm part time and have mon/fri off which is amazing for this.. My lovely mum is gonna bring over lots of food so I don't need to worry re cooking (don't fancy my husbands attempt however sweet it may be!). I luckily have a paper work session in the week so can sneak off for scans which take a few mins and intralipds will be at home at weekends Fridays and Monday's ??. So don't think it should be too bad juggling work. the short protcol (which im on) is really quick and over before u realise. My colleague did it last year and has a lovely little boy and I didn't know she was doing it at time but she somehow managed to with full time work and just booked a week off and coincidently it was egg collection week. I just hope it works, if not u take 2/3 months off and I'll just go again. And keep going until one works?!!

Tryingno1 · 21/05/2015 21:44

Sorry for mammoth post Blush

Rosa27 · 21/05/2015 22:06

Trying .. I've a REALLY good feeling about this for you. You're so young still too so I'm sure you'll get lots of good quality eggs so even if you were unlucky first time (but sure you won't!) you'll be 2nd time lucky and have other options for future. Part of me of course wishes I had done this years ago now ,. Worried about quality of eggs. Anyway great to hear it's all starting to happen for you xx

Tryingno1 · 21/05/2015 22:13

No rosa, u have got here! Who cares when and how, as long as u get ur little Cutie baby. I'm sure it's all Going To be fine for u. I really do. I'm looking fwd to hearing u enjoying ur pregnancy and believing its ok!

Hula2 · 21/05/2015 22:28

Sounds like you ve got it all well organised trying and wow they expect 15-25 eggs must give you a great chance of some super embies.
I sooo hope this works for you 1st go.

Thanks Rosa i remember about ur allergic reaction to humira, i m grateful i did nt get that and yes goes to show still can happen with raised cytokines.

I think i will give the SO a go and if it doesn t work out then at least i won t be thinking what if. Will have to be the cycle after next.

As you say if its meant to happen it will and i remind myself this when i look at ds and think i waited two years to concieve him and i wouldn t change that for a instant so its been nearly two years now for no 2 so lets hope a little bro/sis will be on its way soon !

Tryingno1 · 21/05/2015 22:28

I'm a million trillion miles away from where u r Confused...who cares if I'm 30 (soon to be 31)!

Rosa27 · 21/05/2015 23:26

I know, will feel that way when he or she is safely in my arms. I'm just a nervous wreck and know this is it for me so can't see me enjoying the pregnancy .. Will try find a way though.
Don't worry Trying .. One day you're a million miles away then (a month later) you're nearly half way through the first trimester. I didn't feel this would ever be me, you know that, hang in there .. Xx

Tryingno1 · 22/05/2015 08:21

I know rosa, I can completly understand. I hope the next 7 months fly by. At least we are all excited on ur behalf ??

Tryingno1 · 22/05/2015 11:26

I dreamt of my ivf consultant last night who was telling me it was all going to be ok! (I've lost the plot !)

Seekingmiracles · 22/05/2015 13:44

Sorry your cytokines haven't gone in the way you wanted Hula, but as the ladies have said it can happen either way - Rosa is proof of that!!

I've got a bit of brown gunk again today - do you reckon the internal scan could have dislodged old blood?? It's not dark, or particularly heavy just brown tinged. Sorry I know that's TMI! It's never bloody ending this stress!

I hope you're dream is a sign of things to come Trying! A good omen!!

Tryingno1 · 22/05/2015 14:29

Sorry for the brown seeking, constant worry. Could they see the source of the brown? When is ur scan? It's prob just old blood ESP as ur on the clexane and asprin. Hope ur ok, have u moved home yet?
I'm waiting for my injection teach!

Rosa27 · 22/05/2015 15:50

Trying - I know, and thanks- I've years of pent up excitement to release if I ever lose the fear!
Seeking - it's likely ok. I've googled your situ death before having been there and you can find good and bad stories.. But seems bottom line worth remembering is, after you've seen a heartbeat it's always way more likely things will work out, and of you're not seeing fresh blood and experiencing painful cramps you're not miscarrying. Missed miscarriages are the evil silent type I fear having had two .. But you're being closely monitored so just keep positive, drink lots of water and we will all will a good outcome. I've stressed today as preg symptoms disappeared again, totally. I don't have my next scan until 5/6 at the moment which is 2 weeks today.. Long wait for me! Might try get one end of next week for sanity. X

Rosa27 · 22/05/2015 15:51

meant - googled your situ to* death!

Rosa27 · 22/05/2015 15:52

Oh dear - my grammar and use of bold in both posts is a mess.. Sorry Blush

Snoopysimaginaryfriend · 22/05/2015 19:04

Hello everyone, I've posted here before but unfortunately I'm back. I don't know if I'll be able to keep up with you chatty lot or if I'm currently in the right frame of mind to reciprocate the amazing support you guys offer here but I need your help.

I'm 29 and I'm going through my third miscarriage in six months.

My first was a mmc at 11 weeks in December 14. The second was at five weeks in February. This one got to six and a half weeks before I had brown spotting which is now bleeding and HCG level falling.

A GP has now referred me to rmc clinic so I'm waiting for that.

I had a feeling something wasn't right after the second mc so I paid to see Dr Shehata privately. He diagnosed NK cells and recommended steroids, intralipids, aspirin and cyclogest. Unfortunately I was already pregnant for the third time so didn't start the steroids until 4+4 and this is how its ended.

My maternal health history isn't great auto immune wise. Between mum, aunties and grandma they have psoriatic arthritis, Addison's disease, fatal childhood leukaemia and sarcoidosis.

I have been diagnosed hypothyroid, although it apparently isn't auto immune and is well managed.

I just feel lost. When I look at my future I don't see anything. I regret not trying for kids sooner and I'm petrified that I'm never going to have children.

DH is trying to be positive, we can get pregnant which is a huge hurdle for so many but how many times can we go through this. What if I have a balanced translocation, I can't afford Ivf.

I feel as though my whole life has been devastated. I'm a police officer on a response team answering 999 calls. After the last two times I was railroaded into going back to work when I didn't feel ready because we're so short staffed. but I'm putting my foot down this time and calling OH. I don't think I can go back. I feel like enough of a failure personally without having to deal with all that. The doctor in a and e couldn't believe I was still working shifts.

Anyway I've waffled enough, I just needed to write some of it down.

Please tell me I can have a baby.

Seekingmiracles · 22/05/2015 19:51

Thanks Rosa and Trying. I know the stats and there isn't any pain, but the fear is there and I don't think that'll ever cease! I've got acupuncture in half hour so I'm hoping she can work some magic.
I'm willing you all the luck in the world too rosa, you're so close. Don't lose your positivity.

snoopy - I'm so sorry you're here. It's a shit place to find yourself. BUT we all know exactly how you feel and although this time hasn't worked out, I'm sure Dr S has you on the right plan for the future. I know right now it's so raw and painful but the odds are in your favour. You WILL have a baby. You just have to find the strength to continue. And that's what here for . I only joined a few weeks ago but the ladies have been amazingly supportive.
Sending you big hugs.

Tryingno1 · 22/05/2015 20:15

Hi seeking-thank God for acunpuncture. I don't know if it does anything for me except calm me the hell down and make me see my future positively. I hope urs does the same and keeps that bean strongly in there. When is ur next scan?

Seeking so sorry ur on here again, I do rem when u were on here last and have wondered how u were doing. Please try not to loose faith, Mr Shehata has worked wonders with so many on here and hopefully he will with u soon too. U just need the strength to keep going. At ur Rmc clinic they will test for translocation on the nhs (well they did at mine). Even if u have one u are entitied to one plus ivf cycle on the nhs. Regardless, it's rare and its hopefully ur thyroid and nk cells that need dealing with and mr SHehata will tweak his programme for u. Sorry u find ursrlf here again Flowers. As for work, just do what feels right. I regret being guilt tripped to go back too, all that happened was I got cross at myself struggled at work and people noted I wasn't mysrlf and gossip began. This time, I come first. So do whatever feels right for u. (Although I know that's harder said than done, my DH is on strict instructions when I get a bfp to be in charge of me going into work! As I seem incapable of calling in sick!)
rosa, book a scan so u can have a few mins peace next week Smile
Happy bank holiday.
I'm feeling sick again from my increased metformin dose! Confused.

Snoopysimaginaryfriend · 22/05/2015 20:52

Thanks trying. I think I just freaked myself out reading about balanced translocation. I know that even if that was the problem most people will still have a healthy child if they just keep trying,

I don't know why I'm so doom and gloom when there are so many success stories. DH wouldn't let me give up if I wanted to, I'm just scared of more pain.