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Immune /natural killer cell treatment when ttc or pregnant (aka the 16th pred thread!)

992 replies

sunnyday01 · 05/06/2015 19:22

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:
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5
Tryingno1 · 18/06/2015 14:43

Yay Rosa! Wonderful!
Will be back later for longer message but wanted to say yay! Whoopy! Grin

Hula2 · 18/06/2015 15:08

Yay Rosa great news Smile

Hi Determined good to hear you re feeling good and all ready to take battle. We ve all got to get to the (happy) end of this !

Dr - sorry you re getting work shit too, hope it resolves soon and good to hear physically things are improving. Good idea to take a month to recover.

Drttc · 18/06/2015 16:18

Forgot to say my blood results came back indicating hcg was dropping- so officially in the clear!

Yes a break sounds like a good approach... I just keep thinking, 'what if I miss the 'good' egg?'

Drttc · 18/06/2015 16:19

Congrats Rosa!!!

Rosa27 · 18/06/2015 17:03

Thanks everyone and Drttc. So glad you're through the worst. Totally understand your thinking on delaying. Think Mr S says you should wait one anyway for quality (double check that though) and would help with mental / emotional strength. Enjoy R&R this weekend anyway x

Seekingmiracles · 18/06/2015 17:06

Brilliant news Rosa!! That's awesome! I think you can totally start to think that this is it for you now. Smile

I think the exact same Drttc but I've never fallen in a wtf cycle and I think there a good reason for it. My body just isn't ready. I'm just focusing on supplements, acupuncture, diet and getting active again.

Tryingno1 · 18/06/2015 17:56

Hey guys

Yes Mr s says not to TTC in the cycle after missrriage as he thinks it's more likely to lead to a bad egg. Determined did get preg and miscarried sadly and I rem mr s telling her not to try St after.

Hope r u there? U must be due soon!!

Determined, good to hear from u. U sound like u have the best postuve spirit! Really impressed u took the time off and got ur self to this place physically and mentally. I'm sure its done u the world of good and u will have sucess soon. I'm always too chicken to take too long off! I took 2.5 months off while is waited for mr s appt and results but couldn't bear longer! So well done!

Drtcc so glad no extopic, suppose u got to see the lining?! Sorry work being shit. Hope u have taken some time off

Seeking whoopy for winning some dosh! I'm glad ur feeling focussed and going to concentrate on urself and get ready for next time. Let's hope by ours next bdays! (Is it urs this weekend)

Snoopy dont worry about work. What u have been through is so though and it would be unusual if u came out of ready and raring for work and all of life stresses. Just use it as time to get strong and some relaxation.

Hula yes I am wakening at 3am -6 the last week it's driving me Mad! I then manage to fall asleep till 730 when I need to insert my progesterone! I'm the equiv of 7dpo and have no symtpoms at all :( my positivity is dwindling. My DH keeps telling me off! Let's see! I think I'll test next Thursday as one of the injections gives u a false pistive so need to sure it's out of my system

Rosa again congrats. We joined this board similar time and I know there were times recently where u really didn't think this would ever happen for u. And u truely thought that it over. I always had a strong feeling it would work out for u( I don't know why!) and I'm so happy for u :).

Xxx

Seekingmiracles · 18/06/2015 18:17

Don't start to let any negativity creep in Trying. It's only 2days post transfer. This probably feels like the longest wait of your life but hold out Hun.
My birthday is on Wednesday. Got a few days off next week, a trip to Thorpe park (now I can Hmm), dinner in London with a friend, dinner with dh and potentially a house love next week! So all go!
What are you going to do for your birthday? X

Tryingno1 · 18/06/2015 18:26

It is so long!!!
Sounds lovely! We are going away for 2 nights to a localish hotel which isnt too far away as I'm being paranoid about travelling! Going to eat some nice food and walks and sale shop and let him have some bday drinks for me (and not test too early!)

Seekingmiracles · 18/06/2015 18:57

That should have said house move! Not house love! Haha!
Sounds like you've got some nice things planned. Every time you feel the urge to poas, come here and we'll talk you out of it. You can do it! Wink

Tryingno1 · 18/06/2015 19:03

Oh house move! That's exciting! I hope a new house means new start for u! When is ur pup coming!

I'm def not testing before Wednesday as I can't be bothered with crying on my bday AGAIN!

Seekingmiracles · 18/06/2015 19:35

Yeah hopefully... New house, new start!
We pick the puppy a week Sunday, the he or she will come home at the end of July! Smile
No birthday tears this year...this year you are PUPO... Embrace that!

Tryingno1 · 18/06/2015 20:48

Thanks seeking
I'm not feeling v postive today. I don't know why :( I went to work hoping it would keep me busy which it did but since I got back I feel so fine and have no symptoms. I think I'm gonna drive myself insane until next week! Can't even get pissed to pass the time! Anywys good wife on soon-maybe keep my mind off for 5 mins?!

BumbleBee0 · 18/06/2015 21:37

Hello ladies, I hope you don't mind me joining but I have a question re. Starting pred and thought this would be the best place!
I've had 2 mcs (sep14 and jan15), went for uNK biopsy and the results showed an elevated level of 9% so will be on pred from next BFP, which is now, eeek!
Can I ask of those of you who are pg, when did you start taking them? Did your gp/consultant prescribe them easily or did you have trouble?
I'm only 3+4 and due to see my gp on Monday when I'll be 4+1 so should get the prescription then.

Thanks in advance. I apologise as I've not read through the thread but will try and catch up now.

X

Seekingmiracles · 18/06/2015 22:55

I Bumble, sorry for your losses but congrats on this new pregnancy! Where did you have the test done? Did they not give you a prescription for pred?
Most of us are seeing Dr Shehata and getting pred privately, the NHS as rule don't prescribe it as yet as it's still fairly controversial with limited trials to prove either way... Although we know it works!
I hope you have some luck.and I really hope this pregnancy works out for you. Feel free to pull up a pew and join us, we'll help any way we can.

BumbleBee0 · 19/06/2015 05:18

Hi seeking, I think I've seen you on the rmc thread (I'm cheesy). Thank you, and thanks for the warm welcome Smile
I had it done at coventry hospital, it's self funded so I had to pay and they only provide a progesterone prescription to get you started (to take from 7dpo) so I'll need my gp to prescribe it. He was reluctant at first do referred me to a gynaecologist who basically said there shouldn't be a problem and wrote a letter to that effect to my gp. So fx he should now prescribe them but I'll see on Monday.

Hopender · 19/06/2015 05:58

Hi trying, I'm still here lurking but hopelessly behind with everyone's news. Desperate to know how it goes for you over the next week though. You have been there for all of us so many times that I just really want it to be your turn! I know it will happen for you and you have such a great attitude and strength although I'm sure it doesn't always feel that way.
All is good with me. I have pre-eclampsia (feels like a minor blip after everything else!) so I will probably be induced early at 38 weeks in three weeks! It feels crazy to be at this point. But for everyone still trying (and definitely do keep trying!) if I can be about to have my second baby after seven miscarriages then there is every sign that perseverance and Dr S work! I am a pretty happy person naturally but all the miscarriages left me properly miserable over the last few years. Carrying around the sadness is horrible but you will come out the other side and it will be worth it. You can do it! In the meantime I'm sending huge hugs and love to everyone who has suffered a recent loss of is ttc.
I think somebody asked about when to start Pred? It was day 10 as I had been on it a few months and wanted to give myself a break. Of course the month I get pregnant! Xx P.s. Rosa so excited you are at 14.5 weeks! My advice to you is sleep, sleep and sleep again! I feel like I am still catching up on sleep from my little boy being born and he is three! Newborns are exhausting!

swlondonnanny · 19/06/2015 09:09

Bumblebee I am on the same coventry protocol and went to see GP straight after I received my letter with the treatment plan and he prescribed one box of prednisolone without any problem even in advance. I said that I am worried I will not be able to get it straight away once get BFP and as all my losses were chemicals so very early he understood.
It is self founding clinic but NHS one so no issue with it. He also put cyclogest on repeat prescription for me...
Hello to everyone else, I still read all your post and am happy/said with all your news but am trying to sort out my emotions (feel overwhelmed with all this TTC with immune and thyroid issues) Once my head is in the right place and am back to my usual cheerful self I will post more Smile

Determined123 · 19/06/2015 14:28

Yay Rosa! :)

Seeking you are absolutely doing the right thing...its so hard to not think am i wasting precious time but the break has been the best thing, feel like i have got 'me' back and i am fitter and healthier and feel better than i did since this all started and now i am ready. As trying mentioned Dr S said when i got preg right after a cycle that could have been the reason i MCd as my hormones were all over the place (even though my mum conceived my brother right after a MC)!

Trying hope you are feeling good today? Its sunny and the weekend and your birthday wknd!

Hey swlondonnanny i was wondering how you were doing. I went to see an Endo in London yesterday afternoon to go through all my hormone issues...i can't remember but have you seen an Endo? Perhaps i could pass on their details if you were interested (apols if you have gone down this route). I also feel so much better now i have made some decisions about my next steps...i think its the indecision that has been crippling me these last few months. Let me know if you want their details.

Welcome Bumblebee and hi Hope - can't believe how much time has flown! I am so excited for you :)

Waves to everyone else...i hope you all have lovely weekends planned!
x

Seekingmiracles · 19/06/2015 19:58

Did you fall in your wtf cycle Determined? I don't think my body knows how to be that quick! But you're right, it does make more sense. Feels weird being 'careful' though. Goes against everything we've been doing for the last 20months!

What did your endo say? What is your plan now? X

Tryingno1 · 19/06/2015 20:02

Determined glad to hear u sounding upbeat. so what's the plan?!

I'm ok! Had a huge melt down yest DH sorted me out. Just not feeling too Hopeful. I have no reason to not but I suppose so much shitty luck in the TTC front has made me believe it's not meant to be! Plus still not a single symptom. Anyways had some stern talks from my mum and dH and my dad! So trying to stay more hopeful!

Hi to all, happy weekends xxx

Determined123 · 20/06/2015 09:07

Hey Seeking, do you mean cycle after miscarriage? If so yes and I don't know how (as every cycle is a wtf cycle...last month ov on day 25, 3 day LP!!!) I generally can't get pregnant without herbs or super ov! Think the previous months super Ov must have messed up my hormones to allow me to get pregnant.

Interesting with endo...as expected isn't so convinced with NK theory which matched NHS consultants view. Would treat me with levothyroxine heparin and aspirin...doesn't think my pcos is my biggest issue as I have been preg many times (still tried to get across my short lp and hardly any bleeding for last 6 months is odd) but he thinks my body has been through a lot...it also could be the herbal formula I was on from my nutritionist so stopped that! Wasn't convinced I needed metformin (and since it's done absolutely nothing in my view I'd be inclined to agree...skin is slightly better but still bad)

Egg quality issue and late ov is very unlikely, I could try IVF to ensure the lining I have is optimal but that would be the only reason to have it at this stage. (I can get a good lining with SO).

Generally the fact that I can get preg is a very good think with pcos and I'm fit and healthy and that's all good. Just need to reduce thyroid antibodies which is why he gave me levo...

However, I asked Dr s about these meds last appointment and he wouldn't give it to me! AND, I still believe I have some pretty bad immune response to getting preg so I'm going to do my pred 14 day retest and see how my body responds! If I have to do ivig then I will and have accepted it but will see what the results say. It's my best friends wedding Saturday and that was my deadline for no drugs...she does not need a fat spotty depressed pred head maid of honour! So it starts next week...

Trying its so understandably normal to have a meltdown you are going going through a lot and hormones are all over! But all I can say is you are great place right now in terms of the chances of moving forward on your journey...think of how far you have come you are so close Wink Keep going and don't let the anxiety get to you if you can xxx

Rosa27 · 20/06/2015 10:33

Thanks Seeking, Trying, Determined and Hope .. I just obviously hope things stay on the right track.
Hope - can't believe how close you are! So exciting and amazing. Really hope preeclampsia isn't stressing you too much and you're being well looked after.
Trying - I feel for you as the waiting game is a killer.. But Determined is right .. You're so close and have done/ are doing everything possible.
Seeking - how are things???
Determined .. It's tough dealing with different advice isn't it. Not only confusing but a but soul destroying. However on a positive if you use put together the advice of both and agree on what feels right for you as you're doing then I'm sure it will work out. What is it that Mr S doesn't support? Have you just been out on levo? I've just had more crap from nhs again this week about pred and intralipid.. Even gave me a leaflet about issues with intralipid and concluded not known if cab cause issue to baby or woman's fertility. Thanks for that. I must admit my gut right now is that the levo helped, the cyclogest and my diet changes. My blood tests showed pred and intralipid brought down NK too so very open to this too. But as some in this position also have healthy babies without treatment I do wonder if always necessary.. Or maybe the role of diet and managing hormones (however you do it) could be the most important thing for some people. Anyway thank god I'm not a doctor- and thank god there are some amazing ones out there.

Welcome Bumble - best of luck !
Hi to all x

Tryingno1 · 21/06/2015 08:16

Determine it's so confusing isn't it. Diff ideas and thoughts. As long as ur comfortable with ur combo im sure one of them majic pills will do its trick! I have read of women with high antibodies but normal thyroid levels getting thyroxine so hopefully it works!
Rosa they sound v anti lipids up there! It must be worrying u. To be fair it's just soya bean extract how can it be harmful?? I'm more worried about the other meds im on but to fair the stage im at now I feel like it's no baby or take a calculated risk and pray it works out.
So I've not tested well done me. I'm too scared to see a bfn! I have no symtpoms :( and rem back to my previous pregnancies I have had implantatiom bleeding once and also sore boobs anothe time. But this time apart from being anxious I feel ok. Ugh! Anyways Thursday isn't that far away

Hope everyone else is ok xx

Seekingmiracles · 21/06/2015 09:17

Rosa it must be so frustrating hearing all that negativity about the plan you're on. But you are pregnant and wether that is to do with the cocktail of drugs you're on or not you will never know. They can be negative all they want but had you not had those drugs you may not be where you are now. Screw them and their point of view.

Trying - any symptoms could be masked by the pred. Remember that, I had zero symptoms.

Happy Father's Day to all your DHs, they may not all be fathers yet, but they will be. And they will be the best fathers out there.
Enjoy your day ladies xx

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