Immune /natural killer cell treatment when ttc or pregnant (aka the 17th 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

Good luck drttc, I'll be thinking of you.

I'm thinking of all you, I wish I could contribute to the tnf conversation but you're all so knowledgable!

hula I really respect your decision and I think you're a brilliant mum and wife. It will be hard at first, trying to get out of the whole ttc routine but I hope it makes you happy and I hope you're one of these lucky women who just 'relax' and get their bfp.

I've been discharged from Dr S, he said not to bother with last intralipids because I'm over sixteen weeks. It's crazy. I have my first NHS appointment on Saturday. My brother's mother in law already guessed from my fat belly!

Hi ladies,
Just popping in to say hi.
Welcome Panda - hope you get some answers soon. I'm also not too clued up on TNF but Trying seems to be resident expert there.

Glad you're feeling better Hula. We're not trying this cycle and as I gear up to ov I can feel the urge to creep back.

You're immensely strong Trying. 5 mcs is insanely unfair, but like you I think I will keep going regardless. As the stats show, it does happen most of the time for those that keep going. Keep you chin up lovely, I'll keep my fingers crossed that your TNF comes down this time.

Good luck for Saturday drttc, will keep everything crossed.

We're just back from a lovely few days in Iceland! What a beautiful country! Would thoroughly recommend!

Hi seeking glad to hear you had a good holiday, did you get to see the northern lights?

trying when are you going away? I'm sure it was you that said you had a lovely holiday planned (can't look back on stupid phone)

Thanks for the info Trying, I think I've resigned myself to the fact that baby making is going to cost us :(

I guess I will see what comes out of my NK biopsy but will definitely keep Tnf in mind.

Very jealous of your trip to Iceland Seeking!

Panda I think tnf is more controversial than nk so it's sensible to explore that route first and if u go for a biopsy with prof q it's not too pricey in comparison

Wow seeking I always wanted to go! U have Vegas coming up too?? I think all of us on here are immensely strong..and it's our biological drive which keeps us going....I think 1 mc is one too many..u didn't think I could cope if I had a 3rd, 4tj etc but somehow we all do? I'm off in 3 weeks to Malaysia :) 2 weeks of yum food and travels!

Snoopy congrats! So happy for u and ur dh :) and it's nice to have a girl due soon on here :)

That was I didn't think I could cope! Not u didn't think!

trying you and your DH really are amazingly strong and it's said so often by the specialists that strength and perseverance are the most important qualities to have on this journey. It's great that your dh's count has improved a little too, definitely gives you more options. Malaysia sound amazing, I'm so jealous, I can just imagine the lovely food!

My mother in law gave me a book yesterday called 'the hen who dreamed she could fly', it's about a little hen who's egg are always taken from her so she starts out on a journey to hatch an egg of her own, I think I might cry reading it.

Hey drttc, glad you are finding SO ok. Do you mind me asking what size your follicles were? I'm going on month 3 of SO and this is the first month he seemed pleased with my response.

Good luck with testing on sat!

Hi Teakind! Well it was a bit confusing as the lady who did my ultrasound said my two lead follicles were both 19mm+, but then Louise said that it should be average out (by diameter?) so knocked them down to 17.9mm and 17.6mm on cycle day 10. My third follicle was tiny at like 9-10 and my lining was 8.2. I'm not really sure what a good response is myself but trusting what they say!

Hey Snoopy! Glad you're doing well and sounds like you're getting excited :) That book sounds so emotional!! Thank you... Will keep you posted lol!

Thanks as well Seeking! Wow Iceland sounds sooo nice. I fancy a holiday but we have way too much going on as we're moving soon. Surrounded by boxes atm! And then Vegas.... You lucky thing!

Iceland was so amazing - and yeah we did see the northern lights but they weren't as strong as you see in the pics. Cameras pick them up far more than the naked eye. But was still pretty special!
Vegas will be awesome - I'm finally starting to look forward to it. Was so worried that I might be early pregnant that I kind of forgot about it. But now it's more likely than not that I won't be (unless we get some crazy surprise) I'm starting to get excited. But after that we're on holiday ban as we're having building work start in Feb and dh has put his foot down!

I'd love to go to Malaysia trying! So jealous!! Have the best time - you and dh more than deserve it.
I also didn't think I'd get through one mc, let alone 4 but somehow we find that strength, which makes me sure that one way or another we will get our happy ending!!

So glad you've been discharged snoopy . That book sounds very sweet but it would def make me cry!

I'm seeing dr S at the end of Jan so will ask about SO. Also seeing my nhs consultant at the beginning of Jan, so will get management plan out in place so my gp can prescribe my fragmin and cyclogest. Although I'm worried she might put her foot down on that now with the result of the RESPONSE trial.

Seeking- sounds like things are falling in to place. Some fun over the holidays can do a world of good :) And I'm a fan of having an action plan as well so it's good to have those appointments lined up too. What happened with the RESPONSE trial? What's fragmin?

And Trying- Malaysia looks like it will be amazing!! Definitely a good place to loosen up and try some cocktails... Much deserved!

Oh no, what happened with the RESPONSE trial?

Well it's a BFN! I saw it coming with the zero symptoms. I'm now starting to worry something is wrong though... 3 pregnancies in 5 months at the start of the year, then 0 in 6 months that same year? What's going on? I'm worried there's something we're missing that's happened since June and that we're going to look back after trying for a long time and think 'if only we'd known' :(

So sorry Drttc. I had a simular thing last year. Got preg first try first 2 times then took 6 cycles. Then another 6 cycles but then another bfp first try! I was really worrying that it was taking too long and why wasn't it working when it had twice so quickly. Don't they say most couples take a year to get preg? so I think it's mainly down to luck and timing. My acupuncturist also told me that even if you have all the signs of ovulation doesn't mean you always release an egg! That really shocked me so that's when I started SO and got bfp on second try. It's all the more frustrating when on the meds!! I've also found I get bfp in Aug and Dec so then have a big gap, maybe this is simular for you? I've heard of other ladies saying simular. Are you doing SO? (Sorry on my phone so hard to look back). 3 preg in 5 months is a lot and that's what you're comparing it to and I completely inderstand your frustration, but maybe your body is being more selective which is a good thing? It's all such a head fuck!!

Thanks for the reply Billy! Yes this was my first month doing SO. It would be nice to know my body is just being more selective.... But there's never any way to really know what's going on, is there! True they say it takes a year... But they also say to see your GP if it's been a year with no success lol! So where's the line between 'normal' and needing help? Hearing your experience does remind me not to jump to conclusions though... Will just need to wait a few more months before getting too concerned! It does seem so strange to have been pregnant so easily beforehand and now nothing though.

How are you doing?

Yes I know what you mean. It's so difficult to know what's going on. I think for women in our situation, and because of all the meds, the pressure to get pregnant is so much more so it can feel like such a long time! Which of course it is with the rpl! I also worry that my first 2 babies got to 8 weeks but the last 3 haven't been past 5! Things seem to be slipping away!
I'm in the tww. I was feeling quite hopeful for some reason but now worried we didn't bd at the right time and also my 3rd mc started on Christmas Day last year and I just want to be able to enjoy Christmas!!
I think I'll try SO again next cycle.

Sorry for the bfn Drttc, as Billy said maybe the meds are helping your body be more selective but i know how its kinda of a double whamy when you re on SO and had a double chance. However they do say it takes a few months of the superov to work with most bfps on cycles 4-6 (and the only month i got anything was month 5 even tho it wasn t sticky). Hope you ve got some good wine and chocolate to make you feel a bit better.

Sorry drttcc. But like hula said it takes a few months to get so going. U know sperm is fine ur lining is fine and ur ovulating so it will happen!
It took me 1 month the first 2 times and then my third was 5...so it's not a to have some variation. It's so frustrating though! Esp as getting preg is only half the hurdle for us.

Me and dh dtd today after a while as he's not been feeling too up for it. And I actually was like I hope we don't get natural preg again! I've lost all confidence my body is able to hold a pregnancy without a million drugs thrown at it.....I opened the surrogacy file with my counseller last week. She's really amazing if anyone is in 2 minds I would consider it, I only go once a month but she says some sensible things which help me.

Happy weekend everyone and drttc this means champers for u on Xmas day?! A small lining?

Hey ladies not checked in in ages, so sorry, it's been a mad couple of months!

Happy to see positive stories but sad to see its still really tough for some of you.

Trying am so sorry to see what you've been through - but you must stay positive, and have reasons to stay positive for trying in the new year.

And huge congratulations Rosa! Have you got a name yet?

And Hula, like you I am considered 'older' and am currently 43. And am still pregnant thank goodness so try not to give up. I had the Dr S treatment for high Nk cells, 25mg preds, progesterone and the ILs. There is a little boy in there, am 21 weeks tomorrow!
BUT has not been plain sailing, just wanted to update you all in case this ever happens to you, when I weaned off the preds I started to get crazy itchy, got worse and developed into acute urticaria (looks like nettle stings, hives everywhere) I couldn't sleep for itching, was awful and cried so much, and doctor suggested Antihistimines but was too scared to take them in case they harmed baby after everything I'd been through. Anyway, as it turns out I couldn't bear it anymore so paid (more money!) to see skin specialist snd she thought it was an allergic reaction to progesterone. I was due to come off it anyway BUT at literally the same time at an internal nhs scan I was told my cervix was too short (20mm) and I might need a stitch in it to strengthen it so I can carry to full term. AND I had to be on progesterone to also strengthen it all down there. Up til 34 weeks! So had to stay on it - was awful. The skin specialist assured me that certain Antihistimines were safe so I did half a pill a day and it really helped. When that seemed to manage my rash I then had to worry about the cervix. I spoke to Dr S and he said cervix would be fine as had carried my dd full term before but then I had nhs telling me I needed the stitch! They measured my cervix every couple of weeks and it didn't shrink anymore so seemed like the progesterone was helping. But I had to be on the Antihistimines to cope. In the end the nhs consultant said I really should have the stitch as could then come off the progesterone and hopefully the allergy would subside. And cervix would be stronger. After worrying for weeks and the deadline for having the stitch approaching I finally had it yesterday. Had an epidural and the stitch out in, so far so good, just staying horizontal as much as poss. Was a terrifying decision to make. But consultant said he didn't want me on Antihistimines every day and that this was the better option.

Just hope the rash goes now, the stitch holds and I don't have anything go wrong because of it. Then I can start to enjoy the pregnancy and maybe stop worrying (but not sure that will ever happen).

Sorry for long post - just wanted to update you all as had been ages, and everyone's story is so different!

Also the steroids mask so much, they completely masked my allergy which flared up when I came off them. I may have to go on steroids again to get rid of the rash but will know more in next couple of weeks.

But through it all I just know I am so lucky to still be pregnant.
And that's where we're at. Sorry for long post!! Love to all XX

Wow lisa that's sound so awfully stressful but well done for making it to 21 weeks! Have you had your anomaly scan?

drttc so sorry about the bfn. Please try not to worry, as the others have said it definitely doesn't mean there's a problem. You reacted well to the treatment so there's every chance you'll be successful next month, but for now have wine and treat yourself

trying is your counsellor from ARGC? Glad to hear you find it helpful. I wish we could have more of a sensible conversation about surrogacy in this country and make it more mainstream

Had my booking appointment, they kept me waiting for nearly an hour and then my blood pressure was really high (I'm so scared of hospitals now) but it came down the second time they took it. We heard the heartbeat on the Doppler which helped me feel less anxious. Apparebtly my uterus is measuring 18 weeks, does that mean I'm just really fat? Anomaly scan booked for the 29th but I said to DH I might pay for one before Christmas to put my mind at ease.

Hey ladies!

Jesus Lisa - you've well and truly been through the mill!! Well done for making it this far without cracking up! Glad the drs are looking after you. Hope the rest of your pregnancy goes a bit smoother for you.

Drttc sorry you got a bfn. Try not to worry about how long it taking you. I know it's hard but your comparing it to pregnancies that sadly haven't worked out. As already said, your body could just be being more selective. You'll get there. Just trust in the process.

Trying, glad you're finding the counselling helpful.

Drttc - fragmin is just another version of clexane. No real difference.

And the RESPONSE trial concluded that progesterone made no real difference in improving pregnnacy rates amongst recurrent miscarriers. So hoping my consultant will just allow me to carry on

Lisa gosh!!! What's time. i bet ur counting down the week till u can meet ur little one. Stay strong and hopeful and I hope the rash calms down-poor u!

That's interesting re progesterone - makes me think that's more evidence that nk cells play a role and we need more reserch as there has to be a reason for rm

Drttc u ok? Be strong it's going to happen!!!

Counsellor is one from my old Ivf place. U get 3 free sessions on the nhs and she was good so I continued doing it with her privately after. Makes me annoyed that rm clinics don't offer a few free sessions as standard but ivf does? I suppose needing Ivf is more common and so nice have drawn up guidelines for it....while rm not so many doctors are bothered about! (Angry face)

Snoopy wow must be amazing to so far along. I doubt ur fat! And even if u r who cares?! U gonna have a little cutie girl :)

Seeking hope u managed to resit temptation when u ovulated! How long till Vegas? It will be truly amazing!

Thanks for the kind words ladies! I'm okay Trying :)!

We got a dog!! Yep. We had no plans to then decided to see some with no intention of taking a dog home the same day...! But, we all (DH, myself, and Millie) just instantly clicked. Without exchanging a word we knew she was coming home with us. She's house trained (no accidents so far), slept through the night quietly, and cuddles like mad! We're loving being doggy parents :)

Trying, I agree about the RM counsellor... It's unbelievable in insensitivity we have to deal with. I assume it'll be addressed one day, but it's just not good enough atm.

Lisa- what an amazing story!! Thank you SO much for sharing that with us... I know I needed to be reminded that things do work out :)

Happy Sunday everyone!