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

[sunnyday01]

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

Ur still in the midst of it. That's when it's the hardest...so so hard. take ur time to come out of this haze, and hope will be there again....

Trying - think you meant 'Snoopy' not 'Seeking'- though pretty sure everyone will know that so sorry for picking you up ;) Hope side-effects ease off- nausea is tough. I'm loving ice in drinks, cool melon and sorbet right now for all that. Sadly also have a biscuit boost addiction- 2 a day and have to stop myself having more!
Snoopy - really sorry to hear your dad news, and also what you're going through. My third hit me hardest too.. You think 'third time lucky' and surely this is it.. Every time. It does souvd like you really need the treatment though and it wouldn't hurt to find a way to take things easier too so you can look after yourself too. I know it's hard to look after yourself in some jobs but you just have to- some of us, me included, learn the hard way.
If you scroll back to last page I think you'll see our histories .. I'm pretty similar to you with number and type of loss and also results from Mr S.. But please don't think you left it too late.. I'm 10 years older so you can imagine how often I've wished we'd been younger too - but we only met 6 years ago and been trying over 4 - but critically there's nothing at all you can do about the past - but loads you can do to be happy and give yourself an excellent chance of a family in the future. Listen to everyone here, but also Mr S who famously doesn't give false hope. Take care for now and don't go near work until you're ready.
Hula- sorry just realised didn't reply to your q about gender. I always think I will have a boy but be delighted with either... We eill find out in 2 weeks. Think will tell family etc after that if Harmony results ok (pleeeeease!) x

• sad news (not dad news). Really sorry - will start checking before I post!

just realised I'm to totally out of cyclogest and meant to take every night and morning ... Do you think I will be ok without one dose tonight if can pick up more tomorrow??

Eek.. Just realised Boots didn't put more cyclogest in my order and totally out :( I meant to take every night and morning. If can get more tomorrow do you think will be ok - or any other ideas at this late hour??!

I've spent a small fortune on acupuncture in the last 8 months but I love it, it clears my head, helps me relax and I have faith that it's doing me some good both physically and mentally. Next scan is Thursday evening , feels so long away!

Don't worry rosa, just get it first this tmrw am! If u lived closer I'd come give u mine!! Ur placenta will be making enough after 9 weeks and it's only a few hrs, deep breath and don't panic.

Just saw tbe threed on active convos so thought I would say hello. So pleased to see its still going and there are more pregnancies on here! We used to have a big just of all the people who have had babies on the treatment on the thread but it's long gone. There are scores and scores of us though. The thing is very few of us need to be here once we have had a baby and are of course rather busy...

I would say to Snoopy (we used to have another Snoopy ages ago and I often wonder how she is - would love to hear if you're ever lurking snoopy!) and others going through worrying times is that I have the utmost faith in Mr S treatment. I was diagnosed with some of the highest nkc levels they see in the clinic and on the treatment I've been able to have not one but two Pred thread babies at age 37 and 40. You really can get there. Too busy to lurk much but much love to all of you xx

A big list that is. And sorry for multiple typos.

Hi Rosa, I have some left that you can have. Only trouble is that I'm in Gifford, East Lothian, so a fairly massive drive at this time of night. What about 24 hour pharmacy? Sure tomoz morning will be fine though, xxx

P.s. Thinking of you trying. I hear so many positive IVF stories all of the time and I so hope, and think, this will be your time. Sending lots of hugs, xx

Thanks Trying .. And Hope .. Really sweet of you. I'm just off the phone to the Royal infirmary. They very kindly said they would give me a box of 15 to see me through .. My lovely DH is going to drive there now ..maybe I would be fine but Mr S had seen the source for my 5 week bleed and was why told me to stay on 2x day otherwise would have reduced to 1x. Don't need another reason to worry!
Hi to Free too - I was wondering if you're still there, if you ever produced the film you were making? I often think how powerful and amazingly helpful it would be to capture some of our collective experiences for those that follow.. X

Just reading back, and saw your post snoopy. You are going through something horrible at the moment but you will come out the other side, and have your baby. I had three miscarriages in a row before my son, and then four more in a row, including two a month apart, before this pregnancy. I have spent a lot of time feeling pretty damn miserable over the last few years so I know what it's like to feel really bleak. I feel like I'm coming out of that time now though and getting back to the person I was before RM struck, and I really think it will be the same for you too. Your happy ending will come. Have a big hug and don't give up, xxxx

That is good news Rosa. Phew! Xx

I know Hope.. Feeling lucky now! He's home with the box of delights now, what a star. Seemed to even enjoy the trip, spotting bunnies running round the car park! Xx

Hi freelance. I am the snoopy from a few months ago. I hoped I would be coming back with a success story but it wasn't to be. I'm rubbish at keeping up with threads, what with wirking shifts and all.

Thank you all for your kind words.

hope when did you start treatment if you don't mind me asking.

It makes me so happy to see so many of you with success stories. Is everyone under Dr s or did anyone go to Coventry? I understand there are slight differences in the regimen

Morning ladies

Sorry I can't keep up with all the comments...so busy with everything at mo!!

Snoopy am so sorry where you are at right now but it's possible...you have to keep on fighting and persevere and Dr s will help you succeed! I know it feels like you world is crashing down but you will get through it and ready to try again. Push the nhs, I never got karytype tests done but I use accepted it so push hard!! (I ended up paying) don't hold regrets about trying sooner, or anything else...regrets eat you up inside and hold you back on this journey (I have harboured many) there has been so much success from many women at rock bottom I hope that gives you inspiration. Finally work is just that, focus on you as it will empower you and make you stronger and heal you! It's so hard not to feel guilty about work when you are career focus but now is the time for you to look after yourself!!

Seeking how are you today?
Trying persevere with met...it takes a while but I got there and now don't know a thing!
Hula sorry about increase-why is this so damn unpredictable!! Hope your ok?
Rosa hope your ok today and enjoying this bank hold xx

Sorry just realised I missed a whole bunch of post! Can't keep up!!

Hey free nice to hear from you? Quick q was it your number of nk cells or cytoxicity that were high? I've had my 4th mc in jan and retests show pred and intralupds not working well on me...did you ever get put forward for ivig? I've been asked to retest again after 2 weeks of steroids but declined for now...just don't know what my next step is!

Happy bank hols everyone xx

So many posts to catch up on! Hula - can't believe they went up - so fustrating! Trying - so looking forward to hear how you get on with your first round, rosa - glad you managed to get some prigesterone - those alng with the drips are my least favourite parts of the treatment! Hope everything ok with you seeking.

Snoopy - welcome back, I think many of us can relate to you and what you are feeling. You just have to do what is right for you physically and emotionally and somehow you do get through it x

I'm trying not to look here too much at the mo - In fact trying to step away from the Internet altogether to stay as chilled as I possibly can! Managed to speak with louise and sort out all my medication - got so many tablets I'm sure I'm rattling! Got my first intralipid on weds morning - really wanted it earlier but that's the earliest healthcare at home can do it so not got much choice!

The next 7-10 days are crucial to me as my last two mc have been within this time so just got to take a day at a time. My biggest worry is that I have absolutely no symptoms - nothing! I know every pregnancy is different but can't believe I have nothing!

The brown seems to be trailing off again.... One day at a time... Thanks ladies
Sunny - I had very little symptoms, only thing of any difference was that my boobs felt very slightly sore. I've nothing at all since starting pred. Wishing you all the best, chill out and take it easy. Easier said than done, I know.

Seeking, good to hear the brown stuff is trailing off, after bleeding in all 3 of my previous pg - I'm very nervous about going to the loo at the moment!

My boobs haven't even felt sore! I can't blame the ored as only been taking it 3 days but I guess all pregnancies are different! My intralipid stuff arrived this morning ready for Wednesday as someone had to be in to sign for it and knew I'd be in this morning - the actual so.oution looks tiny to the bag I had last time. They have suggested I go for my first scan in after I get to seven weeks so 2 1/2 weeks to go yet - bets it's going to be the longest two weeks ever. I keep wondering if I should do another test?!

Trying to take it as easy as possible but we had planned to spring clean our house today - we have decided to split it over the bank holiday instead and I also I'm doing all the easy stuff, not too much bending or stretching! I can't sit about all day as I'll drive myself crazy - just trying to find the right balance!

Freelance you're a legend! Before I joined this thread I went through a good bit of the previous ones, and your story (along with your thread mates) was so inspiring. I admit it was my ray of hope when I felt like my dreams of a family were over. Those old threads are why I've revived the progress list- it such a great visual for newcomers and current members to see success (and the story behind it).

Snoopy, welcome! Sorry you've had to go through so much to get here :( It's absolute crap. But youve come to perfect place for positive vibes, reassurance, and quite a bit of knowledge.

I'm always following along ladies, cheering in the background :) Really chuffed to see Rosa, Seeking, and Sunny are right on track.

Rosa, have you said what gender you suspect?

Seeking, glad to hear spotting stopped. Is your next scan with Dr S or NHS? Will you be 8 wks then?

Sunny, 2 and a half week wait... Ah! I've told myself that when I catch I'll get a 6 wk scan (private or NHS). Too impatient!

Trying, I agree with Rosa about ivf... I have a good feeling about it for you :)

I asked louise about a 6 week scan but as we dint know when I ovulated she said it could be inclusive as it may be too early. I'll see how I feel later in the week (if I get there!)

Did you revive the lists drttc? Yes we always found them really helpful as you could see loads of people progressing and having babies.

I've forgotten exactly what was what in terms of my results determined. I could always ask Louise! I know they were in the top 5% of levels that they see in the clinic - back then anyway (summer 2011). I didn't get retested as I was already on the higher dose protocol. Are you also on hydroxychloroquine? Ivig was never mentioned. I had one miscarriage on the treatment just before my first child but we guessed it to be chromosomal as it never progressed to a heart beat (unfortunately it wasn't tested after that ERPC) and then a second miscarriage on the treatment after my first child and before my second which did turn out to be chromosomal and was tested (trisomy 22 they said).

Hey I should say that the documentary I was filming about my experience with it has hopefully been commissioned! Only by a small channel but they have some good ideas for it. I will keep you all posted.

Yes, freelance, we have! Well, it doesn't have information on previous members... But it's a list with currently active ones! At the moment it looks like this (some people may be about to move up a week)....

3rd Trimester
Hopender- (38 yrs old) 7 miscarriages, one DS, Was on pred, cycolgest, baby aspirin and intralipids. Now only baby aspirin! (29 wks)

1st trimester
Rosa (39yrs) - 3 MMC
(11.5, 6.5, 7.5). 6 months ttc on treatment. On complex programme for high NK, cytokines and thyroid antibodies (hydroxy, pred, intralipids)- had allergy to Humira. Also on SO programme. (10wks)

SeekingMiracles (30)
3mcs (5+3, 4+2 and blighted ovum 6+4). On treatment programme for high Nk cells and PT Gene variant. Pred, intralipds, fragments and aspirin. Currently crossing fingers and toes that this pregnancy works out. (7wks)

Sunnyday (32 yrs)- high nk cells - hydroxy, pred intralipids - 3 mc (1 on treatment) also doing super ovulation - round 1 (got bpf on round 5 last time) (4wks)

TTC

Tryingno1 (30 yrs old)- 3 mc. Ttc since April 2012. 5.5 weeks, 9 weeks, 6.5 weeks. High nk cells. Pred and intralipds. pa1 mutation. C4/m2 mutation. Hla dq match and low LAD. (Last ones done by ivf clinic) pred and intralipds. Along with asprin, clexane, metformin, hydroxy. discovered low sperm count. Starting first ivf injection in 1/2 weeks.

Hula2 (39 years) - one DS (took 18mns with low amh but no other probs), one MC at 9wks, ttc no 2 19 mns (12mns since last mc), low amh, borderline cytokines, high nks, on complex nk plan (pred, intralipids) about to do Humira for cytokines.

Drttc- (28 yrs old) 3 MCS (6 wks, 4wks 2 days, 5.5 weeks), very high NKC on complex treatment plan: hydroxy 2x day, 25 mg pred from ovulation, add cyclogest on bfp & Intralipids every 4 wks until 16 wks. Testing on May 28th.

lilliesandchocolate (32) 1 mc, 1dc, 5mc, 2nd dc on pred and cyclogest and the vitamins, 1mc. pred,cyclogest,intripalids and the vitamins.

WTTC

Determined123- awaiting (retest) results. 4mcs (2 on treatment). PCOS, Borderline NK Cells and v.high thyroid antibodies.