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Original poster

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:
Lilliesandchocolate · 23/03/2015 21:48

We will all of us get through this and achieve our dreams - is what I meant to write.

Drttc · 24/03/2015 10:10

Here here, Lillies!

It's tough but we need to be kind to ourselves. If we were taking care of a friend with the same issue would we put them down and worry them? No! Not only because it's cruel but because there's no benefit from it, only harm.

CD8 for me so the the DTD has begun!

Tryingno1 · 24/03/2015 11:47

Hi lilies-it's so hard to stay sane in a time like this! Ur doing great, keep postive and update us after u see mr s

Good luck drtcc! U usually catch quickly so hopefully a bfp on the board soon!

Hi to others-how are we all?

Drttc · 24/03/2015 19:34

Good luck tomorrow Lillies :)

Original poster
sunnyday01 · 25/03/2015 08:46

good luck today lillies!

All ok with me, just on AF and back on the SO drugs for a few days!! Got my scan next thursday and then will be back in the BD routine for a week or so.

OP posts:
Determined123 · 25/03/2015 09:21

Good luck today lillies! Thinking of you Smile xxx

Tryingno1 · 25/03/2015 12:20

Good luck lillies thinking of u...x

I've finished after week of DTD! On the pred and being a good patient this month! Only started weight watchers and nice to see the pounds slowly coming off!

Tryingno1 · 25/03/2015 12:35

That message made no sense!

It meant I've just finished a week of DtD (well 4 days but feels like 7)

And

I've started ww...

Determined123 · 25/03/2015 12:51

We'll done trying ;) all the dtd will help to lose some pounds too Wink

Fingers crossed for you!! Xx

Tryingno1 · 25/03/2015 12:59

Thanks determined
My ivf appt had come throughBlush
Not sure what to feel...
Let's see what they say about that tube and if it's really what's holding things up...or I should just keep going.
I hope it just happens soon, but have accepted that ivf may be what's needed...so maybe SO like Shehata suggested tooo...or maybe SO with IUI which I think there is more evidence for....to be honest I'm open now to anything as long as I get a BFP and it sticks! This jounrey is getting longer and longer, every time I think I must be near the end another muscarriage or now-no bFp! Not my time for my baby yet...must be patient
X

Lilliesandchocolate · 25/03/2015 20:25

Bad news for us. No longer a heartbeat. To be expected I think as the dates to measurement we're so out.
Obviously gutted.Awful news to be told so far from home.
My local epau have told me to come in tomorrow, to hope for a eprc on the emergency list. But already wiping a huge amount of brown and even had some red bleeding since the scan so will have to see what happens overnight. Desperate to have the procedure so it can be tested.
Am now home to pack a bag and de-nail varnish.
Thanks for all your thoughts xxxxxx

Tryingno1 · 25/03/2015 20:47

Oh lillies. I'm devastated for u. So so sorry. Hope all goes well tmrw.

I know u asked a while back about d and c. I've had 2 -they were fine. Over quickly, no issues after. its emotionally less traumatic than medical management (I found). Make sure u stress u want it testing, as they struggle to do this for some reason-wrong pot/not enough specimen etc. I've not been able to have results with mine.

I'm so so sorry xxxxx

Determined123 · 25/03/2015 21:15

Am so so sorry lillies. Am devastated for you. I hope all goes as well as it can at the epu and you can get tested.

You and dh look after each other as best you can at this time Flowers ?xxx

Determined123 · 25/03/2015 21:18

Trying I wrote a long post to you earlier but lost Internet and the post! Anyway I'm pleased you got your ivf appointment. I know it's not really want you exactly want but it's a step in the right direction and a back up if you need it. And so many times that elusive bfp pops up just before Ivf startsSmile x

Hula2 · 25/03/2015 22:24

Oh lillies, so so sorry. Hugs to you andyour family. Xx

Drttc · 25/03/2015 22:52

So so sorry Lillies. At a loss at what to say...

Remember to be kind to youselves (both you and DH). Be gentle and do whatever you need to experience a bit of peace and comfort. Whether it's having cry after cry, and/or arranging for a babysitter while you and hubby cuddle over cheese and wine... Stay strong and continue to support each other xxx

Drttc · 26/03/2015 20:29

Hi ladies,

Dr S has just put me on hydroxy... Anyone familiar with this? Do you continue taking if pregnant?

Original poster
sunnyday01 · 27/03/2015 07:39

Just quickly popping in - sorry to hear your news lillies, will be thinking of you xx

Drttc - I'm on hydroxy - interesting he has put you on it so quickly! I got it once I had had a mc on the steroid treatment. I think you continue taking it all through pregnancy. It's quite safe, people who suffer from lupus and other immune diseases take it throughout pregnancy. I've had no side effects at all on it.

OP posts:
Original poster
sunnyday01 · 27/03/2015 07:40

And a,so you need to take hydroxy for 6 weeks before trying

OP posts:
Drttc · 27/03/2015 08:29

Thanks Sunny!

Well it's a bit late for me not to try in this cycle...! Here's hoping it either does it's work quickly or I don't need it!

I was surprised he prescribed it as well- though I had asked for a reason! I suffer from chronic unexplained hives (which he's found actual hive outbreaks can correlate with miscarriages episodes) but hadn't had them in a few months. Over the last few weeks they've returned, but instead of full on outbreaks, I just have a few at nearly all times. Very strange to have it all day everyday, and I was quite worried about what it meant for my autoimmune system activity... In addition to my poor cytoxicity results I think it makes sense to put me on something extra! May not end up doing much until next cycle though!

Rosa27 · 27/03/2015 08:44

Sorry everyone I've been MIA for a bit... But mostly so sorry Lillies to hear your news. I know all the stages of grief too well and just hope you're giving yourself the time you need and are being super kind to yourselves. We never know when it's meant to be but as lots of people say it's a numbers game for most, and most do get there somehow. Take care x

Rosa27 · 27/03/2015 08:59

I also just wanted to mention SO and IVF.. As well as hydroxy. I've been reflecting a lot lately and had a particularly hard week when my DH was away all weekend at a stag do and I realised how dependent I'd become on him and how time is running out for me.
I'm on the second cycle of SO and upped my dose, it may be upped again next month. I had a local scan and the doctor said I shouldn't waste time as would be 39 soon abc just go for IVF with embryogen.. It's apparently very successful for people who suffer recurrent miscarriage. So have asked my GP to refer me and waiting. He said I should stop immune therapy if I do to avoid infection but of course this is not what Mr S recommends.. Always nice dealing with mixed opinions!Confused
Anyway it may take until June or July to sort and would need to give myself a month or do off the SO and other meds first if I do so will do at least another SO month I think.
I've been on hydroxy since late last year after I had an allergy to Humira. It seemed fine for a while but for the last month my skin had been a bit red, my scalp a bit itchy and I've started losing an alarming amount of hair which has also gotten really dry. I am seriously considering stopping as Louise said pred and intralipids should be sufficient. Such hard decisions.. If I knew I could have a healthy baby sticking on SO and hydroxy I would sacrifice all my hair for the pregnancy but this whole thing is a gamble as we all know .. I never believed it would be so hard and so long .. But I do think it's important to look after ourselves and look and feel as best we can throughout all this so leaning towards giving it up.
I know we are all different and have different blood results so not trying to worry anyone else. I've stated trying to cut out gluten and cut dairy down too as I get patches of what I think is psoriasis on my elbows and think nutrition plays a big role .. It suggests I do have other autoimmune conditions. Anyone else had success with nutrition? Does anyone else know about IVF in Scotland too?
Well I'm sorry for such a long post but had been a while. I hope you are all ok and to hear good news soon from more people x

Drttc · 27/03/2015 11:09

Thanks for that info, Rosa. How long would you say you've been on it? 4, 5, 6 months? Have you fallen pregnant on Dr S treatment before?

I'm afraid I'm not familiar with IVF... But it's something I would certainly consider if I needed too. It does seem they have a lot of success :)

Drttc · 27/03/2015 11:10

Also, I'm surprised the hydroxy hasn't helped calm your autoimmune disease symptoms! Thought that was the point :(

Rosa27 · 27/03/2015 11:16

Hi drttc- it's been about 5months, maybe a little more. My last pregnancy ended in July last year (3rd miscarriage- was my second MMC) - and only found out about treatment after that. It's hard to know what the triggers are but I am looking more into nutrition as it can treat the cause not just the symptoms.

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