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

991 replies

sunnyday01 · 06/02/2015 20:10

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

OP posts:
Snoopysimaginaryfriend · 01/06/2015 19:43

rosa so sorry to hear about your grandad. I'm thinking of you and your family x

Snoopysimaginaryfriend · 01/06/2015 19:39

welcome morgan. Did you do your tests with Dr s? I think your right about the Intralipids, I don't think the nhs will fund them despite the success they seem to have in the private I've world. sasha they are about three hundred pounds a go.

drttc I have everything crossed for you. I'm sure you and your little one will be fine and we'll keep the faith for you here until you're strong enough to believe it yourself.

Went to see Dr s today. He was very reassuring and is very confident that we will have a baby. He told us to keep positive and keep trying and he's more than happy for us to go on holiday in September even if I am pregnant by then.

I mentioned I had been speaking to you guys and he said it was brilliant that we have somewhere we can all go for support and to talk to people who really understand how we are feeling.

It's been nearly two weeks and I haven't heard anything from the nhs despite being promised a phonecall or letter by now. I feel completely abandoned by them and I'm glad I went private.

MorganLeFey · 01/06/2015 14:55

Hello All,

I'm still waiting for my results appointment (Friday!) but then will be TTC again with a plan that might involve steroids/intralipids... So I've been lurking here for a while! Wishing everyone luck.

I've had two MMCs just after seeing HB at 8 weeks (& a more "normal" bad luck spontaneous MC at about 6/40 that was probably a blighted ovum) after a normal first pregnancy so my money's on an acquired autoimmune clotting/NK thing disrupting placental function but we'll see...

Sasha - Mr S NHS clinic has steroids in their nk plan booklet but not intralipids - I suspect there's not enough evidence for them to be funded on the NHS yet? Steroids are relatively cheap on private prescriptions but apparently progesterone/heparin not so much so better to get that via NHS if able. His private clinic website does say to avoid pregnancy but...

Seekingmiracles · 01/06/2015 14:35

Sorry to hear about your Grandad Rosa. Look after yourself. As has already been said, I'm sure some good news will be just what your family need.
Drttc - I hope your blood results put you at ease! The try to relax a little.you'll drive yourself mad with worry. One day at a time Hun.

SashaKerr · 01/06/2015 14:07

This reply has been deleted

Message withdrawn at poster's request.

Rosa27 · 01/06/2015 14:04

Sunny - I had my first at intralipid late too and asked Louise whether I should wait 4 weeks and do all later and she said yes ... Prob doesn't make a big diff either way though x

sunnyday01 · 01/06/2015 13:06

I am meant to do the intralipids every 4 weeks but because I got my bfp a bit later I had my first drip at 5.5 weeks - am guessing I will still them at 8, 12 and 16 weeks - if I make it that far!

Thanks for the tips rosa, think I will ask them to do that for me and see what they say. As for scans I am hoping I can get away with next week (7.5), 10/11 weeks, 12 week (nhs) and then maybe another one at 14/16 weeks, but guess it all depends on what he says next week. I seriously wish I could go to sleep and wake up next Wednesday!

Drttc - once you get your HCG levels back (and assuming they are good) you have to step away frm the tests!! Lets us know how it goes though x

OP posts:
Tryingno1 · 01/06/2015 12:36

Rosa so sorry to hear about your grandad. Hope ur holding up ok. Ur family will welcome some happy news from u. I'm sure ur results. We'd will be fine :)
Drtcc-I know its so hard to contain the anxiety. But just try not to buy those clear blue tests. I had a perfectly Progressing preg 2 years ago (miscarried at 9 plus 2) and the clear Blue jumped about from 1-2 to 2-3 all the time. And then it levelled off. Are u a Dr too? I am too-what type? Hope not a ob and gynae trainee?!

Rosa27 · 01/06/2015 11:15

Drttc- will hopefully have good news thurs from scan but also worried about Harmony test - get results this week, prob wed. If all good will see if can share a pic.
Trying- if all good will tell everyone later on Thurs. Had sad news my Grandpa died last night. Weird how these things happen at same time..
Hope you keep feeling ok and drugs are working as you say, sure they are x

Rosa27 · 01/06/2015 11:12

Sunny- I know it's a nightmare with intralipids but I've been in your shoes a couple of times and asked Healthcare at home to set up but not take payment until I gave them the nod after my scan- and then asked if the nurse could bring the intralipids with them (and they did). Worth asking. On scans with Mr S I've seen him less than I should .. I think he was accepting I'd have a little less as in Scotland and able to have regular scans on nhs here .. But then had a bad back and not flying while pregnant so that's been prohibitive too. I saw him a lot before but only at 8 weeks so far. I tried to book at 14 but he's full up which is a shame as would have fitted with a work trip. Need to speak to Louise about when to see him next.

Drttc · 01/06/2015 11:11

Damn... Won't have results in until tomorrow. Figures!

Drttc · 01/06/2015 10:54

Sunny- I missed your post before!

Haha it's too late for me... I gave in to the fear!

Milestones are so scary & exciting all at once. You're going to feel so much better after that scan! For the intralipids I decided I'd aim to do them exactly 4 weeks apart. I think it's a good idea to do them before your hol so it'll give you peace of mind while you're away. I can understand why you don't talk about it... If I wasn't so damn obsessive I'd be tempted to put it to the back of my mind as well. Life eh!

Drttc · 01/06/2015 10:48

I've had a complete break down of faith and am on my way to get my hcg levels tested. I just need to know wth is going on in there! Sorry I'm so preoccupied with this :( These RMC scars run deeper than I like to admit.

Trying it's really great that the drugs are going well! Of course I can relate to your freak out- was crying this morning thinking I'll never have a child (while staring at a Clearblue that read 'pregnant 1-2 weeks). It's really freaking hard to keep the faith... Luckily we've also got science & statistics on our side though :) I KNOW it's going to work for us. I just don't know when. And I'm a Dr, so trust me ;)

Rosa- feeling rubbish is no fun!! But my god it's a testament to all the wonderful things your body is doing. What a beautiful miracle :) Can you post a pic of your scan? Can't wait!

sunnyday01 · 01/06/2015 10:42

Hi Everyone - just thought I'd quickly pop in and see whats happening!

DRTTC -STEP AWAY FROM THE TESTS!! I know its really hard but I think they make you panic more, as others have said you have to just concentrate on the fact that you are pregnant! I only did one test this time around and it has made me so much more calm as I made the decision I wouldn't keep doing them - I would just deal with each day as it comes. It is hard as you don't want to get your hopes up.

Trying - its all coming round so quickly now - glad you are getting on ok with the drugs and that they are not having too many side effects. keep us posted.

Rosa - can't believe you are nearly as 12 weeks - to me if feels like it has flown by! Can I just ask how many scans you had with dr s? On my treatment notes he says he wants to see me a 6,8,10, 12, 14 and 16 weeks which seems a bit excessive, but also expensive!!

Hope everyone else is ok - hope, hula, seeking, snoopy...sorry if I've missed anyone

As for me, I'm just trying to keep my head down and solider on until my scan which is next weds - 10th June. I have made a big milestone this weekend reaching 6 weeks and so gone beyond the time of my previous 2 mc but my first mc started at 6.5 weeks so still worried. I am just hoping the scan will give me some reassurance! It feels so long away though! Not sure when to book my next intralipids either - as meant to have them at 8 weeks, but I go on holiday on my 8 weeks (if I reach that point) so guessing I will need them the day before I go - but cant wait for scan to book them as will need to turn around the prescription, get things delivered etc as I will need it on the Friday, and scan is only on wednesday afternoon so not long enough! its all so complicated as I don't want to book too many things in advance in case it all goes wrong. DH and I haven't even really spoke about it - I think we are both just holding out for the scan to see whats going on.

OP posts:
Tryingno1 · 01/06/2015 08:55

Hi rosa sorry u feeling pants. U could ask Mr s if u could reduce it more gradually to give ur body less of a shock? But sadly the preg naseau and exhaustion will porb start kicking in. I can't bel ur here already so exciting! When do u think u will tell family. I'm sure they will be extatic for u!
Snoopy great u have had supportive friendlies. I've told one my whole journey and one about my muscarriages but not that I'm having ivf she still thinks im ttc although it's been a year since last miscarriage she must wonder wots going on.
I'm having the occasional freak out that I won't even get preg let alone think about miscarry but I'm trying hard to suppress those thoughts and think happy. I don't feel any diff on the drugs so I hope they r working?! Will know on Friday at the scan I suppose

Rosa27 · 31/05/2015 23:23

Sorry as ever for so many mistakes - no idea what 'skid' was meant to mean! Sure you'll work the rest outBlush

Rosa27 · 31/05/2015 23:20

Snoopy- I agree with Seeking, keep the faith. Easy for me and others with BFPs to say I know but believe me I've felt just like you and skid seriously considered if I was wasting precious time I could be truly living as was destined to be unlucky .. But of course would feel that way after recurrent devastation .. But we all need to give the medication a chance .. Seems many to get lucky and I truly hope we're all in that category. Just be really kind to yourself right now and spoil yourself every day.
Trying - really happy for you that you're coping so well right now.. Really hope the process goes by quickly and smoothly and can't wait to hear more good news.
Seeking - glad you're also in a good place with it all. I can't believe I've still not told my family but couldn't bear to see them upset if things went wrong again and kind of been good for me to have time off thinking about it when I see them given they are the only people I've been seeing apart from DH and one of my BFs. Really hope later this week I get good news at the end of 1st trimester.
Drttc - I agree with everyone else but I would be a hypocrite .. I did the the clear blue to see it move up .. They did eventually but not always when I expected, do just don't put all your trust in them. Focus on relaxing and visualising a growing bean as you breathe.. I did that a lot!
Sasha- welcome back again. Sounds like your medication will be less full on than some of us so really hope you get on the right track quickly with minimal side effects.
Speaking of side effects .. Has anyone our there gone through pred withdrawal? I'm going from 10 to 5 for 4 days tomorrow and have really felt more utterly exhausted and pretty sick at times. Hard to find stories online of people withdrawing after taking to avoid miscarriage. Hope how I feel is normal and it won't last much longer.
Hi Hula, Hope and everyone else - hope this is a great week for everyone and positive as it can be x

Seekingmiracles · 31/05/2015 22:51

I know I've still got a long way to go but you need good people around you for support at times and my girlfriends have been pretty brilliant.
Next scan isn't until the 11th now Trying.... AGES! Wish I'd arranged another NHS one this week!

Snoopy - I know right now it's so hard to imagine ever getting a happy ending but you HAVE to believe that you will. With the right help you will get there, just stay strong.

We're also getting a puppy! In August!! What with moving house, all my appointments and a hopefully continuing pregnancy I think I could possibly have gone mad!

Snoopysimaginaryfriend · 31/05/2015 20:49

Hello everyone, and welcome sasha. Is Dr Thum at the Lister? The standard treatment from Dr s and Coventry seems to be a combination of aspirin, cyclogest and steroids with some intralipids and heparin sometimes in the mix so I inagine the Lister do something similar?

drttc I second what everyone else is saying about those tests. Also please remember that a single measure of HCG won't tell you very much. My HCG level was very high at four and a half weeks but two weeks later it had halved despite being so promising at the start. Each pregnancy is different and will develop at its own rate, all you can do is look after yourself. We're all rooting for you.

trying that is so exciting! I hope it all goes well, the whole process bamboozles me but I think I have a tendency to read too much info rather than just relax and trust the doctors. In response to your question, I guess I am TTC. I'm using the opks but I don't expect to ovulate until after my wtf cycle is finished.

I was so depressed last night when DH was working, I texted him to say I think we should just get a puppy. His reply was 'you want a baby and a puppy then'. I told him how low j feel, that I've practically lost hope and he said he still has faith we will get there if we can just keep going. I said I would keep going for him, because I love him, but I just don't see us having a happy ending.

But we might get a puppy in six months haha

Tryingno1 · 31/05/2015 19:39

Yay seeking. So glad u felt u could get excited and share the news! That's great. When is ur next scan?

Seekingmiracles · 31/05/2015 18:46

Glad you're feeling good Trying! Try to stay that way!! Very exciting few weeks ahead Smile

I confided in some friends yesterday- was nice to be able to spill the beans. They're all aware of my history and have been great, so felt right to tell them now. I'd tell them if something went wrong. I just wanted to share some good news with them finally.

Drttc - as Trying said... STAY AWAY from the clear blue tests they cause unnecessary worry. I did one test only and vowed not to buy any more! Trust in the medication. This time will be different.you need to stay positive! Get on YouTube and do a pregnancy meditation.

Sasha- my plan with High nk cells is pred and intralipids. And so far so good.

Hula2 · 31/05/2015 18:38

Drttc - i second what trying said, those tests are evil and i ve read on forums many times of them causing undue stress when everything was fine (even of ladies at 10 wks still reading 1-2wks !). I d say the fact you could pick up faint lines at 8 dpo on any test is much more relevant and a positive sign that you re starting off with a good hcg. I know its hard (i ve been there) but i d try and stop testing, it won t change what you can do but it could really stress you. Sending you hugs to just stay strong and hang in there.

Tryingno1 · 31/05/2015 15:59

Hi sasha. Glad u have ur results. Most get treated with prednisolone and intralipids if levels are high. Some people use ivig too. Most on this thread have had good sucess with pred intralipid combo.
Drtcc stay away from those
Clear blue! If u can! They are not that accurate and u need to stay postuve for ur bean.

Drttc · 31/05/2015 15:03

Hey Trying! Hooray for the start of your IVF journey! So exciting to finally be able to get going :) Glad you've had no issues. Intralipids should be a good experience- seems like the ladies who administer are always very nice :)

Seeking- chuffed you're scan went well :) Things have been so positive for you- this bean is the one!

Sasha- I'm so lost when it comes to the meaning of NK results! Seems like no matter what diagnosis is given we have an example of a success story though. If Dr S says he can help you, he must have experience with those levels as well. I'd just have faith that if the treatment has worked for others, it will work again :)

Honestly I'm a complete wreck. I'm CD27 and the clearblue digital is still reading 1-2 weeks. I know that I'm technically right about to hit 4 weeks, but I thought it would shift to 2-3 weeks by now. I feel devastated. By comparison it seems other people have high enough hcg to read at 2-3 weeks so I'm kind of preparing for a loss at this point :( So depressed!

SashaKerr · 31/05/2015 14:46

This reply has been deleted

Message withdrawn at poster's request.