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

Ahh lovely news Lisa, such a milestone to have reached. I hope the rest of your pregnancy is smooth sailing.
Great news on your scan hula, I'm cd 12 so shouldn't be too far behind you again. Fingers crossed this cycle works for you Hun x

Thanks Seeking, lets hope we both get a lucky egg this month !

Fantastic news Lisa, i was wondering how you were getting on just the other day. Hopefully you can relax a bit now.

Congrats Lisa, and Snoopy.. Have I missed anyone else?
Hula.. Everything crossed this is your month.. So hope so!!
Trying.. Wow.. You must also be so close.. They must know so much about you now (almost as much as you;)) that I'm sure you'll come back from hols and start a positive chapter in this very, very tough journey.
So sorry I've been away so long. I'm utterly shattered as physically and emotionally been through the mill.. On top of starting a new, full-I job with long hours to match. I didn't want to moan here through as know how incredibly lucky I am to have got so far but then had tonnes of trouble getting back on (reset password 4 times!) But you read articles like the one promoting First Heartbeat (how do you get TLC by the way?) and you realise how important it is to share stories (for people like us.. But also the ignorant, insensitive types who post incredibly selfish comments)
So I'm over 31 weeks now and looking and feeling 41 weeks.. Have a growth scan next tues. I'm scared to prepare in any way in case I jinx it but I can see I might need to start thinking of essentials (what are they?!) I'm due for a c-section at 39 weeks (my choice as I'm 39 so they would induce me at 39 weeks.. Everyone I know who was induced had a long, long labour and all but one has an emergency c-section.. So thought after all this I'd be best to just plan one.)
As Sunny has said, daily anxiety about conceiving, turns to anxiety about miscarriage (still scared when I go to the loo!) and then about lack of movement (had 3 extra scans on top of my more frequent ones and felt guilty but saved my sanity). Ice and sugar can help prompt movement so I've been known to eat a Mr Freeze and M&Ms during the night when stressing in the wee hours of the night!
Sorry for the long message. I think of you all daily and hope for happy endings for us all.. Sooner than later.
I still can't believe after so many years I might be one of those I've read about where things work out.. Scary even writing that as so scared to jinx it! I keep wondering .. What was different and I've read so many of you write about the drugs and nutrition. We are all different so what works for one may not for another. For me, despite not always taking pred, I had taken 2/3 days after I might have conceived (2nd super ov cycle on 7.5mg).. And only took the pred to 10 weeks before weaning despite having a complex profile. It may have been the pred, the intrallipids or the levo thyroxine (I'm subclinical low thyroid) .. Or the cyclogest (bled a little at 5 weeks and took a double dose to 15 weeks), or the nutrition (the vits and I avoided gluten entirely for the first trimester .. Even cutting out dairy mostly.. Full back on it all now!) It def wasn't the Humira (despite v high TNF alpha (think c42) I had an allergy to that) and I also stopped hydroxychloroquine after 5 months after my hair started falling out (and before I conceived).
Anyway - it's hard to know, but I wish I did. I don't think I needed everything. But if I had it in me to do it all again, I'd do it all again..
Next time I will keep it brief! Xxx

Wonderful to hear from you Rosa! We really do need the success stories to lift us up. THANK YOU! I can sympathize with the password resets... I think we all went a bit quiet when the site was having issues. How's hubby and family handling things? Congrats on the new job! Once again so happy to hear you're on your way to your happy ending- much deserved!! X

And congrats Lisachick1- thank you for keeping us updated. What was your history again?

Rosa - so good to hear from you. Wow only 8 weeks to go ! After taking so long to conceive ds i remember the daily paranoia but felt a bit better once past 30 wks as even if baby comes then you ve got a good chance they d still be fine. Sorry its been tough, the last trimester is pretty physically demanding. When do you stop work ? I think the c section and not going overdue is a sensible decision (i was 41+4 with a 9lb baby and had a long and ultimately forceps birth that given the option i would make the same descision to avoid). I hope it all goes smoothly and can t wait to hear that you ve finally got to meet your little one.

Thanks drttc and hula. All good with DH and family.. Starting to look into buying the paraphernalia which helps them I think know I'm more confident .. But still have my (major) wobbles and dreading 3 1/2 more weeks.. Exhausted!
I should be able to keep up a bit better after I'm on mat leave. Hope he doesn't come early! Having said that, I'm a little worried about just how heavy I could be.
Really hope to hear more exciting news soon... And Hula, is it a week or so until you know if you've been 5th time lucky with super ov ? X

rosa so good to hear all's well with the baby. Sorry you feel so exhausted. The last few months seem t have flown by but I can't imagine how stressful they have been for you, but you're nearly there!

hula what did Dr s say about throwing everything at it like you planned?

Thanks Snoopy - how are things with you?

Wow Rosa, so lovely to hear from you. Can completely understand your anxieties but you are so close. I think also the elective csection is a good idea, I can't think of anything worse than being induced. Your success definitely helps to lift our spirits. I hope the next few weeks fly by for you and you can relax and enjoy the last few moments of pregnancy. Xx

Only just catching up, glad the scan went well hula - lucky month 5 fingers crossed!

Great to hear from you lisa - 12 week scan is a great milestone to achieve. I think it's normal that we will worry and be nervous all the way through. The worry just changes as you progress, I know mine certainly has - at the moment it's wondering if they baby is moving the same or less than the last few days etc.

So good to hear from you rosa, I could have write these words myself as it is exactly how I feel so you are not alone. I'm so scared of buying anything for the baby incase I jinx it. I haven't yet thought about labour or csection but I have a scan and consultant appt at 28 weeks so it may be brought up then!

Thanks everyone. Just started pred so testing in 10 days. Dr said i can do intralipids for my last month so just hope something falls into place.

Snoopy hope you re doing ok and managing to stay distracted till the next scan - will it be the 12 week one next or are you having another one earlier ?

Hey ladies,

The person who is making the documentry First Heartbeat has asked me to share this with you guys (i m sure many of you know who she is but she doesn t want to post using her prev online name as she obviously is fully recognisable now).

This is a link to her guest post

www.mumsnet.com/Talk/guest_posts/2487100-Guest-post-After-four-miscarriages-we-found-our-happy-ending

She has been amazed to get tons of press coverage- the Mail, Telegraph, Sun, Mirror, Huff Post and she is even going on Loose Women tomorrow.

Finally she wanted to send you all lots of love.

Absolutely warms my heart to read that post and the responses! Have Loose Women and First Heartbeat set to record. It's going to be an emotional evening!

8dpo today and the sensitive internet hcg test is stark white. That's month 4 of bfn- BUT today's a special day for our community so I feel extra supported :) You're all amazing x

Lots of love going out to you all today. You are all amazing strong women. Good things happen to good people. You will all get there. Xxx

Agree- it's a day to take extra strength from the growing knowledge, awareness and support.. And to strengthen the faith.. I owe so much to you all.. And wish you all every success ASAP. We all deserve it xxx

Hey guys!

Raining here and then rem it's the prog today and national awareness day

Lots of love to u all, this is a hard journey we are all on but in grateful to have people who understand to cheer me along. I hope we all get our rainbows...

Rosa how lovely to hear from u! So glad it's all going well. I always had a positive feeling about ur happy ending. I know it's not happened yet, and ur worried sick! But i have everything crossed that all will continue to go well, and good descion re elective Cs! So so happy for u :) u throughly deserve it. Your right about which combo worked. It's hard to know. I'm sure overwhelmingly it was good egg and good spermcombo. But more importantly everything just came together as it should :)

Argc were explaining to me how ur immune system goes up and down all the time which is why they check it frequently in pregnancy. It made me wonder if some of those ladies who get pregnant successfully with no treatment just had a "lower" immune system then? If that makes sense. It just all came together for them then...like my tnf was 23 last year and now is 33..and also I once got to 9 weeks...I know shehata thinks that after 9 weeks nk cells are less likely to be the cause maybe that time I just fell pregnant when my immune system was quiet and it was a chromosomal loss .sorry rambling!! And also who knows wot works and doesn't!

Sorry bfn drttc, it will happen rem it's about a sticky one this time. So let it take a bit longer but hope the next one works

Fingers crossed for u hula and seeking

Hope ur feeling well Lisa and snoopy and sunny our other preg ladies!! xxx

trying I still haven't used that 'p' word, maybe if I ever get to a successful twenty week scan.
Hope your enjoying your holiday even if the weather is crap.

Sorry about the bfn drttc, 8 dpo is still very early though.

hula all my fingers crossed for you! The intralipids have to be a week before predicted ovulation don't they?

I wanted to have a scan at ten weeks before my second intralipids but it's so hard to try and fit it in with dh's stupid shift pattern and I haven't told anyway at work yet.

Do you think I should tell my GP yet? I'm really dreading any sort of contact with the NHS. My usually low blood pressure was high at the scan so I think I'm getting white coat syndrome.

I'm thinking of you all today. I would have liked to have lit a candle but dh is working a late turn so I'll be following the pup around thinking 'is he smelling just because he likes smelling or is he finding somewhere to piddle' haha

Hi again ladies! Thanks Trying and Snoopy!

I'm thinking about going all out next cycle and doing pre-ovulation intralipids PLUS super ovulation... I've of course completely forgotten everything you've all mentioned about SO. What is it again? How much does it all cost? Will I go bankrupt doing it?

Hey Snoopy it is all such a juggle with work, hope you can work it out to fit your 10 wk scan in. Its difficult to know when to say see your GP, but since you ve had a good 8wk scan then you could go just to get in the system. I seem to remember the first apt at the gp (which was actually with the community midwife) was just really to fill the forms to which hospital you were going to be booked with.

Dr - SO is taking letrozole (a box of 28 tablets is about £22 dr s gives you these) starting day 2 or 3 for 5 days and then getting a scan about 2 days before you d expect to ov (around £200). Usually you ll then be advised to do an ovitrelle trigger injection (£40 you get a prescription for this and need to order at a chemist) so all in about £300. I had minimal effects from either drug than maybe being a bit more emotional just after finishing letrozole (poor dh - no time of the month is safe anymore ha ha !).

Trying - its so hard to know about any of this sometimes but i m sure you re in the best hands with argc.

Just lit a candle with ds (dh is away) under the cherry tree we planted for the LO we lost 18mns ago. Will def be watching first heartbeat tonight (prob just as well dh is away and no doubt will blubbing esp as on pred which seems to make random crying over things more likely!).

Thinking of all you ladies. x

Does anyone know how to view TLC online as we don't have it.. Have BT vision and Now TV but no TLC :(

Wow - Lisa's story sums up what we've all felt at some point. At every point I feel like I've felt the same way she has. What an inspiration she is. I'm really thankful she has made this documentary. Thank you Lisa

Sorry Drttc, think I must have missed your bfn post. 8dpo is mega early. There's still every chance you could get bfp x

Thank you Lisa for the documentary. I hope that it raises the profile of miscarriage.

What an amazingly touching documentary, it shows that together we are strong enough to take whatever this journey has to throw us and gives us hope that a happy ending is possible.

Hi All

I am a long timer on this thread and our journey has yet to reach it's happy ending, but I just wanted to post a couple of things on here in case Lisa who made tonight's documentary is lurking.

I'm sure you will agree that she was incredibly brave to bare her soul through the hideous journey that we are all so sadly familiar with, so that the issue of miscarriage becomes something that can be talked about, rather than being ashamed of.

We all know from the enormous comfort we derive from being on threads, like this one, how beneficial sharing our experiences is as part of the grieving and healing process and for finding the strength to continue. The vast majority of women on this thread when it started, and there have been many, have gone on to successfully have their longed for babies. Without putting words in their mouths, I expect that many of them would credit the facts or treatments, the specialists or drugs, or simply a positive mindset when they needed it most on this thread as a large part of the reason that they are now mummies.

Unfortunately my DH and I are one of the very few who didn't 'get there in the end'. Over a 6 year journey and 7 miscarriages (which started with me getting pregnant naturally and progressed through clomid, letrozole, ivf and donor eggs as my years advanced - combined with full immunes and ivig) I firmly believed we would be successful, as everyone else seemed to be eventually, as long as they didn't give up. Sadly this was not to be, but my DH and I are comforted by the fact that we tried EVERYTHING we possibly could, and I know that you will all understand how important that is, as you travel your own journeys. We never lost hope, and even now, as we take a different path to find our family, I know we will get there in the end.

This thread, and other similar ones have been a lifeline to me, as I know they are to you all - to have a place where your can share your personal loss and joy with people who can empathise with you so completely is invaluable.
Lisa's experiences poignantly conveyed 'normal' pregnancies for ladies like us. Documenting the roller coaster of emotions, the drug taking, terror before each scan and the heartbreak that scars your pregnancy until the moment your baby is in your arms. These feelings must be truly alien for anyone who has only ever experienced 'normal' pregnancy and yet it is our shared reality and probably is for countless others who haven't been lucky enough to stumble upon this thread.

I have waffled on for so long, and I apologise, but I just wanted to say a massive thank you to Lisa, if you are out there, and a huge well done for persevering and getting the film made and broadcast. It was emotional and wonderful in equal measure.

To all of you - whatever stage you are at, keep going, and even when it's over, it's not over.

seeking I loved your friend's film too, what a resilient lady, so glad she now has her family.