Immune /natural killer cell treatment when ttc or pregnant (aka the 18th 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

My stats:

First Trimester

SeekingMiracles 31, 4 mcs (5wks, 6wks, chem & 9wks).
High nk cells and Pro Thrombin Gene Mutation. Steroids pre bfp, intralipids, Fragmin, aspirin, cyclogest and vitamins.
Currently 8weeks pg.

Damn I always forget to add the cyclogest

Okay I'll combine (and add to mine)! :

3rd trimester

Snoopysimaginaryfriend- 30/31 weeks pregnant with a little girl- 3 miscarriages between nov14 and may 15 - 1 Mmc 11 weeks but stopped at 8, 5 weeks and 7 weeks. High nk cells, treated with pred 25mg from ovulation, cyclogest, intralipids from bfp and aspirin with vitamins. Previously diagnosed with hypothyroidism so already taking thyroxine.

2nd Trimester

Drttc- 17 weeks pregnant, Baby boy due August! 29 yrs old, 4 recurrent chemical mcs (1 on treatment), very high NK cells, aggressive treatment: hydroxy x2, pre-ovulation intralipids, 25mg prednisone, cyclogest, Super ovulation programme after 5 months BFN. Went gluten free and regular acupuncture

First Trimester

SeekingMiracles 31, 4 mcs (5wks, 6wks, chem & 9wks).
High nk cells and Pro Thrombin Gene Mutation. Steroids pre bfp, intralipids, Fragmin, aspirin, cyclogest and vitamins.
Currently 8weeks pg.

hi everyone

lovely to hear about all the pg ladies on the thread who have been here for sometime. I am one of the relatively new people having joined the discussion but my rmc history is much longer and convoluted.
Are there are any stats for all members of the thread that we can add to or are the stats only for the currently expecting ladies?
x

Hi Annaif! This was actually inspired by old threads in which the ladies had done the same and some points it was so extensive! It was a long list including 'Pred babies', women in each trimester, and women ttc or waiting to ttc. It was really cool because you saw women slowly move up the list. If you go back a few years I'm sure you can find a few. There were all sorts of histories including I believe one lady who had 2 Pred babies after 7 miscarriages!

Def not just a list for pregnant ladies Anna! Add yourself and hopefully it won't be long before you're moving on up through the ranks too. I think for new people to join its nice to see where everyone is in their journey wether ttc or pg

I just looked and I'd actually saved a list of women who had Pred babies (or were very close) for inspiration It doesn't have their miscarriage histories but usually it's at least 3, unless they generally struggle to conceive. I know freelance (below) had 3 prior to treatment and 1 on treatment (possibly 2). It's interesting seeing all the other health issues they list as well.

Old threads

Babies

Stogan - V high NKC - cycle#2, DC#1, Baby girl born Sunday 11/03/12 7lb13.5. Our First Pred Thread Baby!

Digitalgirl - High NKC - BFP cycle#2, Baby boy (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12 Our Second Pred Thread Baby!

BFP 3rd Trimester
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks

Comedy - V High NKC - BFP cycle#2, DC#2 – 14/5/12

Iggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- 21/5/12

BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 33+2

Freelance - V High NKC TTC#1 Hydroxychloroquine, Pred, Intralipids, 400 Cyclogest, Thyroid/hashimotos. MC 1st Pred cycle. 2 Pred babies!

Cheerfulcharlie - V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred).

batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 22+4
coleyoz - V High NKC. DC#2

Ok then, here goes for what it's worth!
annaif: 1# DS, then diagnosed with unexplained secondary infertility as ttc for 18 months for second baby
Followed by 1# 20 week mmc, 2# miscarriages (9w5d and 8w 5d), all three between Sep' 14 and Oct 15.
Have Hashimoto's/Hypothyroidism, currently on thyroxene.

Have seen Dr S and Coventry team, waiting for results from both. Already on aspirin (by Dr S) and on 400mcg Cyclogest from cd21 (by Coventry)

Hi ladies
Does anyone have any advice regarding DHEA? - Dose or brand?
Also if it changed their menstrual cycle? (certainly don't want that again!)
Many thanks

I hope everyone is doing well? Any scan news?

Trying if you're lurking - still thinking of you and hope you're bearing up. We all miss you xx

Hi Billy,
I took DHEA after my last mc. On and off until this current pregnancy. Had maybe a month or two off. I took 75mg as recommended in the 'It starts with the egg' book. Ideally you'd use micronized but it's quite hard to get hold of in the U.K. I can't remember exactly the brand I used. Not sure if it made any difference, but made me feel I was doing something to help egg quality.
Made no difference to my cycle.

Hi Billy
for what it's worth, I asked Dr S about taking DHEA and he said that if I am taking coQ10 it's the same thing and no need to add to that.
Having read the book that everyone's referring to yet though.
Also remember reading somewhere that it's best to take it for up to 3 months only and then take a break- can't remember why though
Btw if anyone doesn't need their copy of It starts with the egg book and are happy to share it, let me know!

Also, will be in the US over Easter and I've heard that DHEA is easier to get there than here- just saying in case anyone is desperate for some?

Ive lent my copy out and haven't had it back.... When I do you're more than welcome to borrow it also Anna

thanks Seeking :)
I have bought a number of books on RMC and dealing with grief/baby loss and slightly resented the fact that I contributed towards making them commercial successes/best sellers .... I also like the idea of swapping/up-cycling so it was worth checking as a lot of people have recommended it in various forums x

Hey guys

Sorry been on for a while. It's been a really strange and surprsing time! But I'm ok, and will see wot the next few weeks bring. Needless to say the cycle went less than ideal!!! Not wot I expected form the Argc. It's not their fault though. Was numerous events which led to an appalling egg collection. I'm now a lot of grand down and v v unlikely I'll even get a bfp forget about mc!

Seeking glad ur scan went well. U must be nervous for ur next one given the past but u have a great attitude and I'm sure baby seeking is holding on strong :)

Billy dhea is strong stuff but there is some evidence it works. Argc don like people using it while they cycle as it affects hormone levels . My collegue had ivf had her clinic asked her to take it as she had low ovarian reserve. So she had to stalk her tx for 3 months till it did its majic. Not sure if it helped but she got a bfp and baby!

Snoopy ur sooo close! So exciting! Can't wait to hear when baby snoopy arrives :))))

Drttc bet ur bump is getting bigger :)

Anna and hula hope ur ok and Anna good luck for ur results

waves to any lovely ladies I forgot xxx

Hi trying so good to hear from you!! I'm glad you're ok and I really hope things improve for you. it's such a process of grief when things go wrong, I think I'm finding I bounce back a bit quicker than I used to, I hope this is the case for you too xx

Thanks to all for the info on dhea- I've asked Louise too so will see what she says. My main concern is it messing with my cycle which is noted as a side effect.

I hope everyone's having a good week x

Oh Trying I'm so glad you've popped back. I've been thinking about you. Sounds like you've really been through it! I'm frustrated for you! You are remarkably strong, keep hold of that strength Hun.
Did you manage to transfer in the end?

I'm ok, beginning to feel the wobble of nerves set it. I'm 9 weeks tomorrow and see DrS on Saturday. To say I'm nervous is an understatement. I'm terrified.
On top of that I'm living with my parents while we have building work done, which is beginning to test my patience

Hope everyone else is ok

Thinking of you today seeking good luck xx

Just a quick pop in as been really hectic lately.

Trying - so good to hear from. Sorry your cycle didn t go as planned.

Seeking - keeping everything crossed for you today.

Waves to everyone else. X

Hi all, just an update - I've hady 5th scan(!!!) and all is well at 9 wks! The pred, clexane, intralipids, and progesterone are working! All my 3 miscarriages happened before 7 wks so I'm delighted to get this far!
I'm seeing Dr gorgy privately as NHS don't give intralipids and clexane as a precaution. My question is to those seeing shehata through NHS - what happens at the 16 wk follow up appointment and is it worth my while going? It's a long journey for me and I feel I'm closely monitored privately with Dr gorgy so wondering what the point is in going back to shehata.
Also, did anyone get their nk levels retested after 9/10 wks? Dr gorgy wants to do another blood test to see if my levels have dropped - anyone any experience of this?
We conceived naturally so any advice / experienced would be great. X

My stats:

First Trimester

Amelia123, 36, 3 msc (5wks, 6wks, & 7wks with D&C).
High nk cells. Steroids/ pred post bfp, intralipids, Clexane, aspirin, cyclogest and vitamins/omega 3/ extra vitamin D and Accupuncture.
Currently 9weeks pg. conceived naturally. Have a healthy 22 month old boy with no issue conceiving. First pregnancy taking the above medication.

Hi ladies,
Scan went well today. Drs is pleased with the progress and says we should be positive about how things are looking. Still scared shitless but for today I feel mildly relieved. Just wanted to get out of the first trimester!!

Glad your pregnancy is progressing well too Amelia. Not sure about the worth of you seeing Dr S if you're under Dr Gorgy. As far as I'm aware DrS doesn't retest. I think because by the time he weans you off the steroids the baby is strong enough.

Hi Hula! Hope you're well

That's great news seekingmiracles - so are you over the 12 wks now? It's so nerve wrecking just waiting to get to that safe period!
I'm almost afraid to ask but has there been cases on here where they have taken all the medication for high nk cells and then miscarried and at how many wks?
Thanks xx

Hello ladies, would you mind if I popped my head in to ask for some advice?
I'm currently undergoing my 4th round of IVF (egg collection was 3 days ago) and have been on Prednisolone - 10mg whilst stimming, 30mg from egg collection to egg transfer. But my consultant wants me to stop cold turkey on the day of egg transfer as he worries the Prednisolone will harm the embryos.
This seems wrong to me, does it to you? Isn't it the norm to carry on until 12 weeks pregnant?
What is the standard dose after BFP?
Just for context, I've had 2 failed rounds of IVF and a 3rd that led to a twin pregnancy but miscarriage of both at 8 weeks.
Thanks so much for any advice you can give me

Amelia, I'm 9 weeks like you
I lost my last pregnancy at 8+6 on treatment but I was a chromosomal loss so completely irrespective of treatment. I would have lost it even if I didn't have high nk cells. I was just bad luck.
DrS said today that most losses are before 9 weeks, and even with chromosome loss it's rare to lose after 9 weeks. Most missed mc's occur between weeks 6/7 but aren't diagnosed until later.
*
Littlebear* I would definitely push to stay on pred until at least 12 weeks. Especially with your history. It seems completely reckless and naive of your consultants to suggest otherwise. To have 2 failed cycles and one 8 week loss definitely indicates some sort of immune issue. DrS prescribes 25mg to 12 weeks and then wean off (20mg for 4 days, 15mg for 4 days and so on).