Immune /natural killer cell treatment when ttc or pregnant (aka the 16th 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

Seeking- you're puppy is so cute! Really tempted myself but wouldn't be fair until we find a house... How are you feeling?

Rosa- really good news on the job front! You deserve to have as little to worry about as possible.

Sunny- How are you this week?

Snoopy- Ugh this is all so rubbish sometimes (well, most of the time). I feel a little better in that ( I think I was hormonal due to AF being near). I'm okay with it now as I can't assume I know what their journey was.... However, I'm not crazy about the idea of going on the hen do. She's sitting out the activities while us non-pregnant grunts run around building rafts. I was supposed to be sitting those activities out for the exact same reason... It's such a bitter pill. F* :(

Trying- AF arrived for me yesterday so looks like we're matched up cycle-wise! Though this is a full cycle after my miscarriage now. I was expecting it on CD26 but it came CD28. I wonder the meds lengthened it or if it's just a fluke? I wouldn't mind it being closer to the 'average' length so I'm happy with that. Really interesting about argc... I'm scared to ask how much that'll cost though?!

As usual excuse my typos (on my phone)- lol!

Ugh I hate hen party activities like that at the best of times! Is it a good friend? I'm sure u will enjoy it or at least parts of it. I hope this girl isn't one of those annoying "oh look at my bump" girls!! Just remember ur time will come and try enjoy parts of it and have some yummy Cocktails! I wasn't preg for my best friends after 3 miscariages and I told myself at least I could enjoy it and get drunk with her like our old uni days. Small tiny weeny sliver lining!

God dont ask re cost! If u have the full whack immunology and Isci it's like 15 grand or more. Mixture of beg borrow steal and some of our own! I have see a few ladies who get a natural BFP and go there for monitoring, but most of them are those who need ivf/ISCI too.

We r in sync! Are u trying this month then? chance of a miraculous conception with me is like 1 percent! It's quite nice in a way that me and dH can DTD without counting days and timing it until we start at argc which I think won't be for 3/4 Months. Looking fwd to my little holiday next week, got cheap flights and staying in my friends place in Spain she doesn't have a clue what I've been going through despite being a very good friend so will be nice for me to pretend my life is ok! Dh has a big project so needs to work late so it works well for me to go for a few days
...
I must say though...it's so hard isn't it girls. I was thinking how u girls r so brave and together. I feel like I'm about to crack and loosing the point of life! I feel like life has been on pause for last 2.5 years...I wish I had a hobby to keep me busy! But I dont?! I really hate the gym and only going to get fit!

Yes Trying - results for karotyping after the erpc. I really just want to know. I've got my head and heart set on it being chromosomal that I don't know how I'll feel if it's not. I just want out of that whole mess and to move on. AF and those results are all that is left of that that shouty period. After all that I can concentrate on getting pregnant again.
Generally I'm ok - just the odd down moment. Not whole days, just moments that pass. I'm really not enjoying work at the moment - felt like pregnancy was my light at the news of the tunnel. It all just feels so mundane. Feel like I need to to be doing something worthwhile with my life.

Hope you enjoy the hen do Drttc - even if sometimes all those activities are a bit lame. And I hope your friend doesn't make too much of the fact she's pregnant. Nothing worse than smug pregnant ladies! Haha!

Glad you're not being made redundant Rosa!!

I'm going to sign up to a local half marathon for Feb. Try to invoke Sod's law

I know seeking, i can imagine. If it's chromosonal u may feel relieved and have hope in tx. It's a scary time. Either way it's not nice and I hope u get the results soon.
I feel the same about work/life. Getting preg changes ur outlook and makes u more excited about life. Then it goes and ur like I don't want this daily mundane life anymore-that's why I was ttc to change it.
Appt came through 10th sept!!!!!! That's AGES away!

Life is such a waiting game! Waiting for results, waiting for af, waiting for appointments, waiting for our turn for some good news! It sucks.
But September will be here before you know Trying.
I'd really like AF to hurry up!!

Oh trying so sorry it's so far away. I can empathise, I still haven't had my nhs referral and it's been seven weeks now! It's hard as well because you try and fill your life with nice things to take your mind off of it but then I always worry should I have saved that twenty pounds for treatment?

Yeah for rosa not losing her job!

seeking I hope you have some answers soon. It's the uncertainty that is so painful. You can have all the contingency plans in place but the wait before taking the next step drags so slowly.

Today is not such a good day. I forgot to take my thyroxine and wobenzyme, which is no big deal, I can take it later, but put me in a bad mood. But I just feel antsy.

Hi all

Sorry not been around much just been keeping my head down and trying to get through the week. Got my nhs scan today - feeling very worried about it, not sure why but this is definitely the most worried I have been up until now.

I know I have two good scans under my belt but this is a milestone I have wanted to get to for so long - today just feels like it has a bit more pressure! Maybe I'm just being silly!

Roll on 1.30!

Good luck sunny. We're all rooting for you x

Sending positive energy your way right now- Sunny!

Oh god the waiting.... I'm in such a strands place right now! Is it possible to be happy & sad at the same time? I'm generally having a lovely time with my friends, my husband, and my family. Laughing, eating, planning. But when I think about the pregnancy announcement, and how I need to spend the next 3 out of 4 weekends with her (wedding season)... I instantly start crying. It's cruel & unusual punishment. How can I forget that I was going to be announcing my pregnancy (this time) or be in my 6th/7th month of pregnancy with the other ones? Everyone is going to be fussing over her when I just want to pretend my miscarriages haven't happened. My husband will be in the wedding parties so I'm just going to be there... Barren... With the pregnant girl. I know this news wouldn't have affected me this way if the next month wasn't dedicated to hanging out with these people! Worst bloody luck ever. The one weekend in the next month that we aren't spending with them they've actually organized a big friend holiday- so thank god we opted out of that! Can you imagine a full month of baby fussing at the weekend? Small mercies...

Note: I absolutely love hearing about our threads pregnancy success! I hang on every word & it gives me so much hope and joy! I'm just upset about how seemingly easy it can be for others & the way they unknowingly hurt the people who are suffering silently. Suffering quietly is SO hard... But not everyone is a friend who can be confided in.

And another note: Have you all heard more about freelancegirl's film? I really want to see it! It's called First Heartbeat. Apparently TLC UK has purchased rights to air it, but no idea when it would happen...

Hi ladies,
I don't know what I did but I lost the thread... Had to search for it.. Was thinking noone is posting and suddenly pages and pages to read.
Sunny good luck with your scan, really hope all goes well...
Sorry Snoopy you are not having a good day... It is usually little thing which annoy us most, isn't it?
Trying I wanted to ask for a while -hope you don't mind - but did your clinic do anything about your DQA match and low lad. Is it only a partial match? Did you have LIT? I had low LAD but no match but dr Gorgy insisted I have to have LIT while dr Ndukwe said only if there was a match so no need...
Seeking fully agree with a waiting game feeling... Feels like our lives are on hold while everyone else keeps moving on. I really hope the results will give you an answer you want
Determined fingers crossed your results today are good and you won't need the IVIGs
Rosa great you don't need to worry about your job
Hello to everyone else I missed
Afm I had my cytokines/thyroid antibodies retest yesterday, should have my results by next fri. Based on that we'll decide what to do.
Oh I also saw a new osteopath/acupuncturist who thinks that all my problems are caused by my spine not being aligned properly at certain point which is responsible for blood flow and nerve endings for my ovaries!!!!! Everything else is fine.... said he can fix it... of course he doesn't believe in immune issues and steroids are no good... Well I will keep taking all my immune drugs if he likes it or not but am willing to see him once a week for next 4 weeks and see if there is any change. Funnily enough it is the exact place where my back hurts when it is really bad and have had those issues well over 20 years.
Maybe he is a miracle worker...
Off to catch up with the thread properly

Quick reply for now for swlondonnanny-
I have a 25 percent match. And low lad. My clinic said steriods and IL were enough to deal with it. V anti LIT. However ARGC don't even believe in it! And they don't advocate LiT which to be fair im quite scared of and want to avoid! I've read of women with a 100 percent match going on and having babies and those with partial matches needed LIT so i really don't know wot to think. Argc test ur tnf and NK cells weekley in preg (I think) and throw u ivig/il/steriods if they go up-which I suppose if the theory with a dq match-that the match raises ur nk cells which leads to muscarriage so maybe in that way argc does treat it?!
It's all v complex! I know Mr s also doesn't believe in it....
4 miscarriages down and my nk cells are not even high! They are only v slightly over active ! Who knows wot the hell to think!

Wow trying I thought I researched things but reading all the info in your post just made my eyes blurry!

sw the differing opinions and theories are mind boggling aren't they. And maybe he is a miracle worker, who knows what's going to be the missing piece of our puzzles.

I read a nice quote today - everything will be ok in the end. If it's not ok it's not the end.

I hadn't researched all this dq nonsense but ivf clinic does it as part of their immuno tests. When it came up I looked into it- Not sure how much I believe in it. I'm just following whatever the specialist im under tells me to do! So now I move onto someone else it's time to see what ARGC have to say!

Drttc-sorry about this preg lady ! It is realy hard. And also the whole "what have I done to deserve this" this a thought we have all had im sure. Like muscarriage isn't awful enough. Ontop of that recurrwnt. then having our faces rubbed in it! Next few weekends may be though for u, but u will get through them and come out stronger and rem these days when u have ur family in time to come. Eat/drink ur way through it! Or get a hair cut or but a new dress or something silly and meaningless that makes u feel better!

When I had my 9 week muscarriage I was admitted for medical management (which was the most awful exp for me) and as I lay there my DH got the phone call his sister had gone into labour. I've never cried so much. Was first baby in the family and the month after it was only baby talk on the phone, house and what's app. Literally 24/7. Everyone was over the moon. They didn't know I had miscarriaed and I wondered daily what I had done to deserve such shitty timing. somehow I got through it, we saw the baby etc. I cried a lot! And then after a while the pain hot
Better. Since then I've had 2
More miscarriages and she's had another girl! What can u do!? I don't know why we are all being tested like this. But somehow we et through it. Also have to remember much worse can happen, and we can overcome this.

Sunny hope all ok!

Hurry up seeking af!

Determined good luck for tmrw

Xxx

Ps I can spell! Sorry for typos x

Sorry just got home, the hospital was chaotic to say the least!!

Relieved to say all is ok, saw the baby, even waved at us in its own way lol! Measuring 11w 6d, so 1 day further on than Dr s scans but happy with that, so 12 weeks tomorrow!

I'm glad I've had early scans and heat heartbeat, today was a let down as could only see it rather than hear it!

Great news! Whoopy!
Makes u think-u didn't start ur pred and IL till u were 6/7 weeks this time and it's been plain sailing! It's all very random and bizzare! Main thing is ur nearly second tri :)

Oh my god trying... I have no idea how you endured that. Sounds ten times worse than what I'm complaining about :( And on top of everything there's so much guilt for not being entirely happy for them. I agree I need to remember that things could be much worse, and be grateful for all that I have. That was so much easier before... Why can't we just hide in a ttc cave and not leave until we're in our second trimesters?! Also, Were you tested for balanced translocation?

Yay Sunny!!!! Congrats! Wonderful news! Really hope this reduces your anxiety & you can enjoy it more. Now the big question: When do you feel comfortable sharing your news?

I was on hydroxy all the time even on my 'break' from medication as I needed to have it in my system for 6 weeks so thought there was no point stopping. Started drugs and drip in week 5 based on current dates. I did ask Dr s about not taking the medication early on esp the steroids and he said even though I wasn't on them that month, the fact I've had them every month religiously when trying will all help fight those cells!!

Parents know already, told dh's nan and I e told my four close friends but that's it for now, not announcing it on facebook or anything. Feel funny sharing it as don't quite believe it myself!

Yay sunny, so pleased to hear your news. x

Oh no drttc! Don't feel sorry for me-I was merely telling u to try make u feel less alone! That for some reason us RM people have shitty "rub in ur face luck with all this"!! Somehow we find our way through it. I'm not going to lie-it was so hard. When we went to see baby there was like 10 people in the room and they were choosin names and they asked me and dH-what would u call ur baby?! I had to leg the room to stop hysterically crying. Not sure how no one noticed. That whole period in my life was just awful. It was the lowest I was def. Even though it was the second loss everything about IT awful. On top of it all my SIL was such a whine and couldn't cope and complained the whole time about hard it was to be a mum!!!

But what can u do!!!! It's just shit! These things make us who we are and who we become. I hope I'm a kinder more considerate person because of this. I'm def less nosy!! Never will I ask someone when they r TTC or getting married or anything personal like that

Rm is just pants!

Yeah me and Dh were tested by our nhs place-no translocation there!

Yeah so pleased for you sunny. Please stay here and keep updating us!

Yay Sunny - brilliant! It's a bit of an anticlimax isn't it though.. You focus for so long on 12 weeks, but so much anxiety and worry does disappear like that (apparently it never does!) I am 19 on Fri and still anxious and not telling anyone except family, v close friends and boss (though bloody obvious now!) my 20 week scan is my milestone for that but not sure will ever put on Facebook!
Try to celebrate though.. You deserve it! :)
Hi to everyone else.. I'm hoping for more good news before too long. X

Meant doesn't disappear like that!!