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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:
Drttc · 28/05/2015 18:04

Thanks for the info on Intralipids ladies!! She's coming tomorrow afternoon :)

Good lucj with your scan today Seeking!

Welcome Catmum! Congrats & looking forward to hearing lots of good news from you :)

Hey Snoopy, I'd not thought about the due date factor before. It actually broke my heart the other day (before I got BFP) & logged into an old pregnancy app... It read 'Welcome! You're 18 weeks pregnant!' Ouch... Remembering where you 'should' be is so painful.

I'm having a really tough day! With all the excitement of the BFP and months of positive thinking, I thought I'd be able to by pass feeling so low! Realistically, I know I'm in the absolutely most dangerous stage now, my history works against me, and stress/negativity is bad! Why is it so much easier to believe in others & not in yourself? I'm paralyzed by fear & have lost all my optimism :( Which hurts! Part of me is thinking this (being emotional) means AF is on it's way... Despite having no symptoms of AF! I just tend to get crazy sensitive beforehand. I've got to snap out of this! I got a 'pregnant 1-2 weeks' on clear blue which briefly made me so happy... But I know I'll be testing again tomorrow before Intralipids.

Someone shake me :(

Seekingmiracles · 28/05/2015 18:09

I've had all three of my due dates pass me by, the first was definitely the hardest. I had three friends all due at that time and seeing there growing bumps made it all more real that I wand r pregnant anymore. Now all their babies are born it's much easier and I love them!

Drttc - just take it one day at a time. I'm sure you'll feel better when you get past your AF due date. You're on treatment, you e got your intralipids. This time is different.

Hula2 · 28/05/2015 19:57

Welcome and congrats catmum, we ll do all we can to help you on this journey.

Snoopy sorry you re feeling down, the due date is such a hard time and i found all those raw emotions come flooding back for a good few weeks before the actual date. Maybe plan to do something on the day to remember the lo you lost (i put flowers on my grandmas grave as i liked to think that she was looking after my lo now). I found this helped and actually i felt alot better once the date has passed. Stay strong, it WILL happen for you.

Drttc - just take it one day at a time, you re on treatment and there s every chance this can work.

Seeking - keeping everything crossed for your scan.

Seekingmiracles · 28/05/2015 20:03

Phew! Everything ok. Measuring bang on 8+1 which is where he wanted it to be. Heart beat was strong. He's now pretty positive. I feel so relieved! Got another two weeks until I see him, that's going to drag like a bit hb

Hula2 · 28/05/2015 20:12

Yay, SO pleased !!!!

Tryingno1 · 28/05/2015 20:25

Seeking wonderful news! So pleased. Mr s sounded a bit worried last time so must have felt great he was postive now. Hopefully u can relax?

Drtcc it's so hard after our histories to really enjoy pregnancies. But u have the backup, u have the drugs, and ur seeing the country speciliast. It will work out for u. Don't loose hope!

Snoopy - so sorry due date soon. I tem crying when I was meant to go on Mat leave first time around. It's so so hard. I hope u find a way to remember the day if u wish to. And again, don't loose hope u will get there too

2 lovely stories-one from acupuncture lady. 37 year old 2 miscarriages finds out v low amh. Fails ivf twice so then uses donor eggs and works. By now she's 40. Then has a natural bFp and has a baby?!
One story from my mum today (over afternoon tea-bad idea for eating healthy!) lasy adopted as tried for ten years and it was before ivf excited. Adopted a girl, then 4 months later BAM bfp! Now has another daughter!?

Bascially never lose hope girls....

On my end af just arrived! That means the drugs start scared and excited! Grin

Seekingmiracles · 28/05/2015 20:25

That's last bit should have said 'drag like a bitch'!
Thanks Hula Smile

Seekingmiracles · 28/05/2015 20:27

Thanks Trying! Smile Glad AF arrived! Acupuncture must have sped her up!

I love stories like that! Fills us all with hope!

Hula2 · 28/05/2015 21:40

Love the stories trying, been feeling like i m never going to get preg again so good to hear it can happen and hurray for your af arriving, go eggies go !!

Tryingno1 · 28/05/2015 22:05

I know I thought they would cheer us up. They cheered me Up! Hopefully so will do its thing for u, is Dh sperm good? I'm obssesed with everyone checking their dh sperm these days!!!

So tmrw I have to ring the clinic and book my first scan which will prob be next Friday. I've just popped my first hydroxy and asprin and the pred starts tmrw and then all injections on sat-we going away for the night so I've frantically packed my needles and sharps Box into the suitcase! its only 10-12 days of injections then it's all over! I always thought it would take weeks and weeks but I'm on the short protcol. I hope My postive mental Attitude stays throughout. I really hope to God this works, I just don't want
To loose all my hope like I did after mc 2 and 3. It's an awful place to be when u have no hope. I've finally got it back and I don't know if it will be gone forever if this fails! But I have prepared myself For it failing and told Myself I'll just have to Go again. Most don't work First time, must remember that.

Sorry for going on it, I know it doesn't apply to any of u!

Snoopysimaginaryfriend · 28/05/2015 23:30

trying don't apologise. We're all excited for you, starting your journey. You're going to be another success story!

Great news seeking

Speaking of success stories a lady my mum knows was treated for NK cells at the Lister and she now has two children!

I'm starting to get a bit worried and I'm going into a Google meltdown. Everytime I get pregnant I develop this patch of red skin, like a rash on my face. This time it disappeared for the two weeks I took the pred. Just before this last miscarriage I got really bad pains in my knees and the patch of bad skin started coming back. Now it's spread to the top of my right arm so I showed my mum and she confirmed its probably psoriasis. She's had psoriatic arthritis for 35 years. Is this my immune system flaring? I know I should go to my gp but I can't face it, they've been so poor recently.

I will discuss it with Dr s next week.

Rosa27 · 29/05/2015 07:30

Welcome Catmum- and congrats .. Great you've joined on a positive :)
Seeking - woohoo! My phone died (thought was broken) yesterday and just managed to charge .. been thinking of you.. SO glad all good!
Trying - you too.. It's all go and I've a good feeling about this. It's your time. As you say though, worst case you take a breath and go again. But think you should feel lucky.
Drttc - I've found it really tough too but all I can say is for no particular reason some days feel better than others so hang in there and focus in things you can control like good diet, regularly keeping your fluids up and doing anything that makes you feel relaxed. Especially if it also distracts you a bit as time will then drag a bit less.
Snoopy- I hope you feel better today. It's very hard when you plan things out and imagine not only dates relating to your babies but your life. I've made so many decisions around what I hoped would happen. I'm finding myself talking a lot more like 'if all keeps going well' this time but know it would be no less devastating if it doesn't. It's just human nature to dream and hope and so keep doing that because I'm sure you will get lucky soon (this is the lucky thread and a lucky year) and in the meantime we're all here for you xx

Rosa27 · 29/05/2015 07:34

Ps snoopy I had that on my elbows but pred made it go away. It can't hurt to get your GP's advice in the meantime before you see Mr S.. You could always try a different one and you don't need up take the advice .. Just sometime interesting to get opinions and info ..

Snoopysimaginaryfriend · 29/05/2015 22:13

Yeah I know you're right rosa. I think I'm firmly mired in the 'depression' stage of grief. I should have called occupational health today but I couldn't face talking about something so intimate with a faceless stranger over the phone.

DH's working a night shift tonight and one if the girls at work has just come back from a holiday and texted me she hopes I feel better soon because everyone thinks I'm just sick. I don't know what to tell her. She's the only one who knows about the two previous mc but I don't know if I want to tell her I've joined the club no one wants to be a part of.

I have a question for you knowledgable ladies. On my results it says - total NK cell absolute count: 260.7. How do I convert that into the numbers I've seen you talk about or is that your total NK cd69 absolute count - in which case mine is 0.56. Is that really bad?

Rosa27 · 29/05/2015 23:35

Snoopy where you have 260, I have 280... It's meant to be below 200. I was classed as high and you're lower than me so don't think on this one you're beyond the realms of help.. Def seen worse numbers - and also know people with very high who had babies.
I understand on the talking thing.. For me the last thing I wanted to do in precious recovery time was going back to talking about the darkest most painful memories. I do know though that the process if articulating your feelings really helps you process them and move on. I think this can also work with writing like on these forums. Whatever works x

Tryingno1 · 31/05/2015 12:53

Hey guys hope u all had good weekends.
Rosa and seeking hope u had a little less of a panic filled weekend.
Determined have u been able to decide in ur plan yet?
Hula when is ur retest?
Drttc hope ur staying postive!
Snoopy, don't worry about ur NK levels they are typical of those who have raised levels and the meds will hopefully bring them down. Are u starting to TTC now? Take as much time off from work u need, it's a tough emotional and physical process to go through. U need lots of tlc.

I started my injections! So far no issues, got my first scan and my intralipids on Friday. Egg collection week after sometime! Quite exciting and I'm still ina calm relaxed state which is good.

SashaKerr · 31/05/2015 14:46

This reply has been deleted

Message withdrawn at poster's request.

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!

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.

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.

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.

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?

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

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!

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