Immune /natural killer cell treatment when ttc or pregnant (aka the 18th pred thread!)

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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

Seeking get a tonic water and pretend it's gin and tonic?! Or say ur driving?! It's so AWKARD isn't it!!

Well lots of ladies I suppose are in sum situation, I've met a few (get to know faces as u r there every am!!) and some of their immunes have been similar. Although not sure I've met someone who's results have just gone up and up! They might have stayed same, or gone down and shot back up. But I'm have just steadily risen and given my history it's obv not very comforting! But yep I'm def pushing for ivig I've not had it before and it's strong stuff. It's what they used before intralipids came out for us guys, il is the cheaper easier less side effect alternative but it does nothin for my immunes at all and I've had it in my last Ivf cycle and still mc. I still have hope this will work out I just don't know when but I hope it's soon as I can't hack the shit anymore!!!

Snoopy u must be nice and round now :))) so exciting! Have u thought of names?

I am indeed very round trying haha we have had a name since about 12 weeks, the only problem is my brother announced my niece's name in November and they coincidentally chose the same initials as the first name and middle name we have chosen. They don't know we're having a girl and I will ask sil if she minds them having the same initials because I know some people can be a bit funny about that.

It must be so frustrating to see those levels going up when you're doing everything right. 1.5 stone is very impressive! It's just so unfair and I think about you and everyone on the thread every day. You have such amazing resilience and strength, it's inspirational. I was talking to a friend today who was saying that every woman she knew who has children had had some degree of difficulty in the process, we just rarely talk about it. I just know you will get there. Remember - it will all be ok in the end, if it's not ok it's not the end.

Trying I second everything Snoopy says! Tnf does not seem to be the be all and end all as we've heard before. But IVIG does sound like it will put all those immune issues in check... ARGC will give it to you if it's time to try it! They know you've invested a lot to be there and their business is babies- not messing women about like some other places do! Also I really believe what Snoopy said about women having a lot more problems than they let on about. I'm still nowhere near ready to let people know the whole truth :( I've only recently told a girl (THE girl- the smug one!) in our friendship group about my last miscarriage (nearly broke down talking about it). It was a big step because I know she'll tell everyone in our group, and I was pregnant at the same time with similar due date as the only couple in our group to have a child. The reason I told her is because she is really upset over ttc... She's only been officially trying one month (had to come off birth control and get AF first) which didn't win my sympathy at first BUT then she said she was anxious about miscarrying (as she 'knows it can happen') so it really touched me. It was a very different side of her... The bravado had turned to fear- may have been the wine talking lol! I can't see a woman upset over miscarriage and not comfort her. She was very surprised- which shows no matter what you think, you never KNOW what someone has gone through. I also believe that even if they haven't been through the same, they have their own 'RMC' (by another name) that is causing just as must heartache.

Sorry for the rant- forgot to say - Damnnnn girl! WELL done on the 1.5 stone!

Managed to get through the night without too many questions - luckily because I've been so open about all my crap and they all know that we're on a 'journey' to get pregnant I just said I was on some drugs that I can't drink on. Don't think anyone really even considered that I might actually be pregnant.
Sometimes I do wonder if people think - 'oh for god's sake, shut up about bloody miscarriage' etc. But sod it, if it helps one woman feel like less of a failure if they do sadly miscarry then all my harping on is worth it.

You're very considerate Snoopy, i don't think the same initial thing would even cross my mind! Lol!

It's sad you're friend is already worrying about miscarriage so early in her journey drttc. It's not going to be easy for her if things take a few months. Unfortunately it is very common as we know but I don't think she should let it worry her yet... More than likely she'll be absolutely fine.

You've made such an effort to get as healthy as possible trying, that can only be a good thing for you. You should be so proud of yourself. I'm sure the IVIG will do the trick - like Drttc says ARGC are baby making people, they won't mess you around.

Ps- Drttc you're up VERY early!!

Drttc I'm the same my heart breaks a bit when I hear of someone having a mc, even if they r just an acquaitance. I think u telling her shows in some ways ur also coming to terms with it? Well done for being brave :)

Snoopy I wouldn't think at all about the initials!!!!! Does ur bro mind?! That's fun they will be cousins of similar age and play!

Seeking good work! That's great they didn't ask u millions of questions must be liberating to not have to make excuses :)

Thanks girls. I do totally trust in Argc, I know they will do the best for me. They have been amazing so far. I go for bloods at 7, by 2 I have a phone call with my instructions. They change my doses and meds daily and I know they will get the best my body can do. Its my body I'm second guessing!!! I'm quite sure they will give me ivig, my tnf went from 37 to 37 after one intralipids and 37 to now 44 after the second! So it makes no sense if they give me intralipids. Plus I've had it before too and no happy outcome. I need the big guns! Anyways I took the viagra last night was expecting all sorts of se but was fine phew! Let's hope it thickens my lining. Oh also I had my hysteroscopy and there was no scarring to be seen (I just have a thin lining for some reason) and they gave it a scratch and a wash so it's all new lining in there, let's hope that helps too! Must stay positive xxx although I have thought if it doesn't work I'll go back to mr s for hydroxy as Argc don't use that at all and I believe it's good stuff!

Ps thanks for the weight loss was more like 1 and a quarter- Wasn't easy but now I don't have to worry about the pred and putting on weight. My bmi is nicely at 24 and I'm feeling good and my clothes fit properly rather than being snug :)

Haha trying I love that you already have a back up plan. ARGC sound amazing. I waited ten weeks to see my NHS consultant for five minutes and had to point out to him he was reading the wrong blood results haha

It is nice there will only be six months between them, I really hope they get on!

Do you remember I told you my colleague and his fiancée had a late miscarriage? I found out it was actually at 20 weeks not 15. They got married on Friday and they received the baby's birth certificate on Thursday. The hospital still haven't done the post mortem. I am very conscious of the fact that this time I am the 'awful reminder of what could have been'. He has asked that no one talk to him about it because he doesn't want to get upset. I've told two people on my team that I had 'issues' before this pregnancy and I think they understand but I still can't openly talk about what happened

trying it sounds so complicated! I'm sorry about your tnf levels! That must be so frustrating! But everything else sounds great - the weight loss (yay!), the treatment! Sounds like your getting great care there and am I right in thinking there's lots of treatment your getting that you didn't have before? It must be so hard for all these aspects to line up for all ladies that have been successful surely?! I've got a good feeling! You got preg quite recently so your body seems ready and you're having the best treatment for the rest of it. Hang in there. I really admire how brave you are with all the hoops you have to jump through! That babies gona have one amazing mummy and daddy!! Seriously!! Be proud of how far you've come. We're all here and rooting for you every step of the way
snoopy that is very considerate! I don't think you should worry too much and after all you've been through you deserve to give your baby the name you choose. Fingers crossed they don't mind.
drttc I hope you're doing well? It must be hard for you ladies that your friendship groups are that age where they all either trying for babies or having babies. That's the one blessing of my age is that most of mine have had babies already. However instead it means I don't see much of them but I think it makes it easier! Must be hard to feel like who's going to announce next!! I think it's good to talk about mc but it always depends on the individual and the situation eh. I still don't openly talk about mine but would like to sometimes.

I think I've decided to do SO and have rearranged some app - although now I'm on day 3 so starting a day late - does anyone know if this matters? I'm feeling ill all the time tho and so tired I'm feeling like I wouldnt cope well with a pregnancy right now! Since October my acupuncturist keeps telling me how tired I seem each time she feels my pulse! makes me worry about the hyroxy!

Anyway I hope you all have a lovely Sunday! It nice and sunny out atm and it's nearly Spring!!! Bring on the bloody sunshine!! We need it!!

Hey billy! When r u seeing mr s? Did u manage to get to the bottom of ur hormone results? I think hydroxy is usually very well tolerated and se are quite minimal so don't be scared :)
I have no idea about super ov. Sounds like u need to make some time for u and some r and r.

Thanks for ur encouragement , u girls r amazing X

Snoopy missed ur post - I can imagine u almost feel guilty but u sound like a very sensitive and thoughtful woman so I'm sure ur not being insensitive. That's so sad for them :( and so brave he's back at work already.

Thanks trying. I'm seeing dr s on 10th March for a review and intralipids providing my foll tracking scan is good. I'm just so nervous about a repeat of the last SO. And the letrozole makes my bones ache!
I started a new full-time very stressful (at times) job last October so I don't think that's helping my energy levels. I worry the job will effect my preg success chances too! I Would give it up if I knew I'd have a successful preg! But then what if I gave it up a didn't still!! Stuck between a rock and hard-place and I feel that the next 6 months are my best/only chance!! Im 43 in Aug surely that's the end of the road ! need to make some big decisions!!
trying Are you staying at your sis in London? Your dh stay with you? It sounds very complicated?
Keep us posted to how you getting on we're always wondering X

:( sorry u feel ur biological clock ticking loudly, I can imagine each month is a bit of a frenzy. But trust in mr s. U get preg fairly quickly (if I'm right?) so let's hope it's a number game and u just need the right egg and sperm combo.

I'm staying with sis, and dh is with me :) He quit his jobs and he's free lancing to get some dosh! and I'm not working. It's impossible to with these early days with Argc - next week they need me at 7 and 1 for 2 bloods and 1 or 2 scans?!!! plus my job isn't transferable so I've taken a sabbatical. And I love 200 miles away! It's so weird not having a job! But London and Argc are keeping my busy! I know London wel as used to live here so enjoying my fav haunts (minus the bars!)

So hard to know wot to do re job. I reckon it prob doesn't make a difference but I have wondered that.
People in war zones get preg and stay preg?! So maybe stress doesn't affect it? When was ur last bfp?

Thanks trying
Ah that's great that you can take a sabbatical and dh can be freelance. I know I wasn't working for my 4th pg and I was thinking id never fit it all in if I was working!! I hope you can enjoy being in London while you're there!
I think my job is good for me in some ways as takes my mind of things. My last bfp was November, then it's all been a bit arry since then!

Trying - sorry to hear your cytokines are being a pain. Lets hope you get the big guns of ivig . Sounds amazing how they are tailoring your doses everyday. How long till egg collection ?

Billy- sorry you re feeling the time pressure. It s just horrid feeling you re running out of time but you re doing all you can. Re SO i often started on day 3 and think i actually had a better response on those months (two follicle, good lining) than day 2 so really wouldn t worry about that.

Waves to everyone else.

Seeking good luck tmrw!!!!

I had ivig yest, was totally fine!

Thanks Trying!!
So glad IVIG went well!! Will they retest you to see if it's had the right effect?

Hi ladies,

Looks like everyone is doing well and in good spirits :)
So that I get this right (still a newbie at this), what exactly is IVIG and does Shehata not prescribe it?
How is it different/better than hydroxy (and what is hydroxy anyway?)
From other groups I've sort of gathered that Coventry and Shehata use a combo of pg, steroids and clexane/aspirin, but the difference is that S uses it from ovulation, whilst Proff Q uses it from conception.
Presumably IVIG and hydroxy are both steroids?
Sorry for the seemingly naff questions but I've found the women in this group to be a lot more on the ball than my doctor actually is when it comes to explaining the different meds used for auto immune conditions linked with rmc

Ivig is an alternative immunosuppressant. Diff places just favour diff drugs.

Argc where I am use intralipids and ivig depending on ur results. I didn't respond to intralipids (which I think is fairly/very uncommon if u see the success mr s has) and so they have given me Ivig. It's a drip like intralipids and was what most people used until intralipids were shown to do similar things. Intralipids are safer and cheaper. My Ivig was 1.5 grand yest!!!!!!!!!!! Aghhhhhhh!?

On the other hand Argc don't use hydroxy which is a tablet and an immunosuppressant. Mr s used this when people fail on his usual combo of steroids and intralipids (I think never used it as when I found out I needed Ivf I moved to the ivf clinics so not under mr s anymore)
Seeking no more testing till a bfp (if I get one) as that's only 2/3 weeks away anyways and also I don't think there is anything else they can add in!! I'm on steroids asprin clexane now too. Just got to hope it does it thing (please god!)

Basically ivig steroids hydroxy and intralipids are different ways of telling ur immune system to piss off! Each clinician uses them differently and has their fav.
The reason we r all clued up on it is that no doctors agree so we have had to "choose" who's plan to follow and question non immune believers along the wAy! The one drug they all use is steroids. The other 3 is diff. But I think even mr s does use ivig very occasionally as a girl on here determined (a while ago) had 2mc on his tx and he suggested this to her.

Thanks Tryingno1, waiting for my blood test results to come back and see what the doc suggests.... I suppose he puts everyone on his basic treatment plan whether they come back with NK cells or not....
Has anyone seen two doctors/centres is parallel so as to do a "combo" treatment? Not sure I have the patience, time or money to try one person's plan, fail and then repeat the process again (should have named myself tryingimpatiently but I think someone else has a similar nickname!)

prob more like "pessimistictryingveryfedupandimpatient"
hmmm....

Hello everyone. Will have a read in a bit to catch up !
I'm in 2ww and have no pg symptoms at all. Not really many other symptoms either apart from some clexane bruises and odd sensation in tummy and legs. I'm meant to drop my pred dose today down to 10 mg (or is it mcg?) from 20 but I'm a bit nervous in case it causes any problems.
Clinic said to only take 20 for the first four days ....