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

[Hula2]

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

Congrats snoopy!! Enjoy!!

I was on the steroids till 8weeks of preg and weened off like we're meant to. I had a bit of muscle weakness and felt a bit out of it for a while but it was ok.

My sarga with this bfp has continued a bit! I had a faint positive on Sunday - then about 4 hours of cramping and then spotting. That stopped Monday. Did a test tues which was the same as Sunday's - no darker so thought that's it. still no spotting and peg symptoms so thought maybe. Then thurs eve had spotting again so thought it all over. Took a test fri morning expecting it to be negative and it was much darker than tues - proper line straight away. So thought yay! Then spent all day in bed with terrible cramps and some spotting. Now don't know what to think!!
I've doubled the cyclogest as the clinic recommend with spotting but I'm sure this is just delaying the miscarriage!
To cap it all off I've had crippling insomnia since Saturday - this happens every time I'm preg so must be a symptom for me! Been awake at 3.30am everyday!

Oops clicked post by mistake!

... Sorry for the long moan I'm just so fed up of going through all this and getting no where every time!!

I'm not sure if I should continue on the double does of cyclogest as think it's just delaying the miscarriage and will mess up my next cycle.
I'll do another test either tomorrow or mon. If I continue on the pred after Monday I have to ween off as it'll be 3 weeks on them. Which takes 2 weeks. So I'd rather know before then. But the clinic always say to continue on them until your sure.
I've got cramps again today - just feel like af is coming.

I hope everyone is doing well xxx

Hi Billy, I hate hearing you go through this limbo :( Not knowing where you stand with a pregnancy is one of the most agonizing experiences. Have you considered having a blood hcg test? You can find a place with quick turn around times. That's what I did for this pregnancy and the one I had before (£100 for a repeated hcg test with same day results) . They're pretty definitive. I didn't miscarry until 6 weeks with my 4th miscarriage (no bleeding at all) but the hcg results were never promising which helped me prepare. With this pregnancy the hcg were fantastic (despite SO much bleeding!!) and I'm 25 weeks tomorrow. It's a personal choice but I just thought I'd share there's an option outside of of the home tests. Big hug xx

Thanks drttc I know I keep thinking about all that awful bleeding you had and look how things turned out This is what Louise says that you can never tell! Makes it all the harder to decide. Did you have cramps with the bleeding?
I am thinking of doing the hcg if the preg test is still positive. But wouldn't be able to until weds for the first test then fri for second. I've intralipids booked for Thursday.
With the private test is it the same - they test 2 days apart?
Louise always recommends not to do the hcg but I didn't on my 4th and suspected things had ended - got all the way to 7.5 week scan and there was nothing there apart from maybe the tiniest of sacs - I was so distraught and don't wanna go through that again!
Just wish we didn't have to take all these meds, was so easy the first preg!! Hey ho!!

I'm so glad things worked out for you lady - are you feeling more relaxed and enjoying your preg yet? I hope so xx

FFS!! Have just noticed that my first tests were first response one step and the one I did yesterday is first response early result!!! So no wonder it was darker yesterday and the others were faint!!! This confusion never bloody ends!! Had no idea there were different First Response tests!!

God knows how many pregs I've been making that mistake!

...I feel like such an idiot! I just assumed they'd updated their packaging at some point!!!

Congrats Snoopy! Exciting times!

Sorry to hear you're going through this Billy :( af seemed to arrive early for me, yesterday. Today's bleeding is a bit lighter than expected which is annoying. I just want af to do her business and go away! Feeling a bit emotional as just found out someone I went to school with has just had a baby. That's the second one in as many weeks. Tired and bored of being the odd one out. Also very full of self-pity...lol. Oh well!

Thanks everyone for the side-effects info....I felt very weird and restless the day after stopping the steroids and now my energy levels have really dipped. I quite enjoyed being on them - I was as bouncy as heck! Ha!

X

billy that is so confusing. However, I've seen loads of posts about the darkness of lines not meaning much. I know I've had a very dark line two weeks after an erpc for example. If I were in your position I would do the hcg tests but I've been there as well, waiting for results and I wouldn't wish the stress on anyone.

karry sorry to hear you're feeling a bit down. I had a text yesterday from an old friend who has just had a miscarriage and I was talking yesterday to my colleague who ha had two miscarriages and still trying. I think more people struggle to have a baby than we will ever know because people just don't talk about it. My sil didn't have a miscarriage but she tried for more than two years before they got pregnant and she's in her mid twenties so didn't want to tell anyone because she felt like a failure.
You're definitely not on your own. Treat yourself this weekend, you most definitely deserve it!

sunny sorry I missed your post. Id be up for that. Just don't migrate to Facebook like the recurrent miscarriage threat because I don't have Facebook and I want to stay in touch with all the people here who have been so amazing

Thanks Snoopy x

I'm going to have a pampering Sunday I think! :)

Sorry things aren't clear for you to Billy, just makes it all the more infuriating and hard. As if having to deal with all this crap isn't enough. I agree with the others - maybe get a hcg test. I wouldn't stop the pred though, just in case.

Karry sorry you're having a tough time too. It's so hard when you get pregnancy or baby announcements. You can help but feel that it should be you. You will get your time, you just have to find some kind of inner strength and keep going.

Hi Billy how are you doing now? Have you thought anymore about the HCG? Its so confusing and infuriating, I hope you're ok.

Hi Seeking so glad your scan went well.

Happy for snoopy she has started her mat leave! Sofa, meet snoopy, Snoopy meet sofa!

Karyk I hope you're ok - this process is exhausting and I know just how you feel being the odd one out. Things will turn around for you I am absolutely sure of that!

Hi everyone else!

So in my world, I have my 20 week scan tomorrow and I'm so nervous. I'm under Kings and they have also ordered a cardio scan on the baby for directly after the 20 week scan. Talk about double stress. PLEASE PLEASE let her be ok . xx Will keep you posted.

hi everyone

just catching up with everyone's posts as we were away over the bank hol w/e....

Karryk, I am very sorry about the disappointment of AF, it always sucks when it comes and messes everything up. How are you on your ttc now, as in, how many cycles have you been trying on meds?

Billy, I've had a quick look online to check the difference between the two types of frer tests and they both claim to give an accurate reading from 6 days before AF is due so perhaps the darker line may actually be a good indication? Have you had the opportunity to check your hcg levels? Could this not be done through your local EPU as well? I haven't personally ever done it but know for a fact that other ladies have.... I don't think you should give up on hoping this one may actually stick my dear, keeping fingers X for you.

Tumtimes, good luck for tomorrow, I can imagine that it may be nerve racking but I am sure everything will be ok. Hug!!

All the ladies who asked about the Facebook page, it's actually the little sister "venue" of the RMC thread as Snoopy said- if interested I can get you in touch with one of the page admins and they can add you to the secret group. Lots of women stay on both MN and the Facebook group btw- it's all a matter of personal choice and how much time you have to spend!

Happy waves to all expecting ladies, what a wonderful sunny weather to enjoy!

I am counting day 6 on pred and starting progesterone twice daily on Saturday too. I am absolutely not in tune at all with monitoring my OV and just guesstimated a starting point on cd 16 for the pred, which means I am supposed to take a frer on the 9th of May (cd 26). I am absolutely positive that this will show nothing as it's prob too early (last AF came at day 33) but don't want to continue on the pred for no reason further than the 10 days I am supposed to take it. Conversely, I don't want to stop it in the off chance I get a BFP? (fat chance as it's never really happened that quickly but Sod's law and all that....)

Any thoughts?!
Oh and I turned 40 yesterday- baws!

Don't you use opks Anna? Might help you pin point things a bit easier. Especially if your cycles tend to be on the longer side..

Good luck tomorrow tum, I'm sure all will be just perfect.

I had my consultant appointment yesterday... She seemed very anti Dr S - 'he puts too many women on steroids in my opinion' .... 'Doesn't publish any of his findings'... 'No clinical evidence'... Blah blah blah!
I politely pointed out that this was the furthest I'd got - thanks to the pred! IDIOT!!
She also wants to induce me when it starts to that point.... I'm not sure when she means. Before due date/at due date or if I'm late...? Don't see her again until 34 weeks when we will discuss it further and also how long in on fragmin for. DrS says it perfectly reasonable to stay on it until the end (but avoid induction!) she wants me to stop at 36 weeks I think if she makes me stop I'll just ask DrS for more and ignore her! Haha!

Good luck tomorrow tum, can't wait to hear the good news tomorrow!

billy, sending you lots of positive thoughts, hope you're ok.

anna I second using opks. I was a bit naughty, because I didn't want the pred to mess with my ovulation and I didn't want to be squinting at hpts, so I waited to start pred until 72 hours after I got a positive opk and and the tested at 13 days post ovulation. That way if it was negative it would still only be ten days of pred but it removed the uncertainty.

seeking sorry you had a bad experience with the consultant. The consultants I've seen haven't commented on my first trimester and I didn't go to the NHS until after 16 weeks haha Do you mind me asking why she has suggested induction? Even when I've joked about being worried the jelly fish will be ginormous they've always just laughed and said 'a bigger baby should be more robust' and they don't think there would be a need for induction until at least ten days overdue.

Anna - I'd be interested in joining I've had my baby but can maybe I part some wisdom

Well, due to PCOs (not syndrome) the opk's have never really worked for me... they end up stressing me out and pissing me off as they never give me a clear line (even in cycles I have ended up conceiving in the end) so I stopped using them, upon the fertility consultant's recommendation at UCLH.
Having said that, my acupuncturist said to start temping as this is a clearer indication of when the body is preparing for ovulation- as the opk only show a surge of LH but don't guarantee that a woman actually ovulates (or have I gotten it wrong?)

Sunny: I have PM'ed you on how to join xx

Ah I understand. Your consultant is right, temperature is more accurate. I was working shifts so I did the opks but temperature is better if you can manage it.

tum what time is your scan?

Acupuncturist not consultant, haha

I've always done both as temping doesn't always show you when you're about to ovulate, just when it's happened. Which is then too late.... Great confirming that it's actually happening. Just not for timing sex.

Snoopy I think it's because of my Pro-Thrombin Gene Mutation.... Although she didn't know too much about it as it's not very common. So need to read up!!! I see no need to induce me unnecessarily... I'm going to fight it!

Hi all,

Sorry to be joining in with a negative message. I've been on a treatment programme for the past 9 month, was getting really frustrated that it was taking so long. To my delight found out that I was pregnant at the beginning of April and then my excitement got crashed when Dr S confirmed that it's a miscarriage. 8 weeks 1 day no heart beat and the baby is only measuring 6 weeks. Heartbroken, this is my 3rd time.
Has anyone had MVA done under local anesthetic, what was it like?

Also, has anyone miscaried whilst on the programme? Did you manage to get the answers, was it chromosomal or not enough steroids?

Hi Tina, so sorry for your loss it's just shit!! I had a miscarriage last time discovers at my 10 week scan, baby had stopped growing at 8+6. Opted to go for erpc0, so no experience of mva. It was a chromosome issue so I can at least take some comfort in that.
I think a few of us have had mc's while on treatment, but also then gone on to have success. You have to just keep going, finding the strength the carry on is hard but I truly believe it's a numbers game. Eventually it will work out if you have the strength to just keep trying.
Sending you big hugs

Thank you seekingmiracles. I feel like my body is absolutely wrecked after this time, not only steroids but constant worry.

Wishing everyone good luck with your trying and pregnancy.

Hi Tina I am so sorry to hear that, I wish I could give you a hug.

I have only just started the steroid treatment so I don't have any experience on it I'm afraid but I can imagine how disheartened you must feel.
Will you be doing any testing to check whether it was chromosomal? The comforting factor in that case would be that it was not the treatment that wasn't working, it was simply bad luck- I hate to think of it as a numbers game (or russian roulette as my DH calls it) but sometimes it really is just that :(

Please be kind to yourself and rest, you need time to heal hon. I have not had that procedure, only had D+C and EPRC, but I have heard from other women that it is not too uncomfortable.
xx