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

[Tumtimes1]

HI all - my scan went well as did the baby's heart scan so I am really pleased.

Hi Tina so sorry to hear about your 3rd loss. I don't have experience of an MVA. I have had 3 miscarriages and only the second one did I require an erpc which was under general anaesthetic. Its a horrible thing to go through and I really feel for you.

[billy15]

Hi ladies
Congrats tumtimes!!

tina I'm so sorry for your loss. It's so hard especially when on treatment. I've had 3 loses on treatment, 2 chemicals and one got to 7.4 scan and all they could see was the tiniest of fluid which might've been a gestational sac. I was devastated by that loss as it seemed like such a long 4 weeks of thinking I was pregnant and the first loss on the treatment.
I think for me it's a lot to do with my age as I'm nearly 43. Another couple of loses on the treatment I wasn't on the hydroxy for recommended time and another time we'd not been 'trying' so hadn't tested when I should, so hadn't started the prednisolone (I take hydroxy instead of pred then the pred with a positive). (Sorry if this isn't reading very well, am typing on my phone).
I've not had the mva treatment. I had one natural mc at 14 weeks (baby stopped 8.1 day). Then a d&c (baby stopped at 8.1 again). Then the other 4 have been chemicals.
What stage are you at at the moment? Are you bleeding? What does your epc recommend?
I'd recommend the pre- ovulation intralipids when you try again as lots of ladies have had success with this and also super ovulation can speed things up and takes the monitoring ovulation side of things out of it.
Sending huge hugs to you xxx

[annaif]

Hi Billy,

When did you start pre- ovulation intralipids and why? Which plan have you been on?
Just feeling a bit nervous about it all as I've only just started and feel that I don't have all the time in the world to experiment with what works and what doesn't- sort of thought we may try the "throw everything at us" approach - which I know is not always the answer....

Congrats on the good scan Tumtimes1!

[billy15]

Just a little update on my current situation as I've been hiding as a way of trying to cope!
I'm still unsure of this pregnancy. I had the spotting and cramps last thurs night and Friday, then sat and sun very little. I've not had any spotting and no real cramping since but in my experience the cyclogest stops any spotting but also af so I cant trust the no spotting!
I've taken a couple of other tests (the last was yesterday) and they've all been positive and have been as dark as control line since Saturday just gone. I had intralipids yesterday.

I don't feel at all preg at all apart from sore boobs but that could be the cyclogest too.

I'm thinking of having the hcg beta done on Monday and weds as can't get a scan for another 2 weeks. Just so scared of going for another scan and there being no pregnancy again!

Did most of you ladies do the hcg beta?? I find it strange that the clinic say don't do it.

I hope everyone is doing well and enjoying the lovely weather xx

[billy15]

This is the first time I've done the pre-ov intralipids and luckily got a bfp. I did it because I've had 3 chemicals on the treatment so it seems to be what they recommend. And also if doing super ovulation I guess it's a case of throwing it all at each cycle.
I didn't actually do super ovulation for this cycle so they said not to do the intralipids but I had a chemical the cycle before which was super ovulation - but at the follicle tracking scan dr s said my mature follicle looked like a cyst as it was 25mm, so said not to bother with the intralipids. Which I didn't. But it can't have been a cyst as I got a bfp that cycle which then ended in a chemical. So this time I thought I'm not gona do SO (as I've heard you're more fertile after a mc) but I'm gona do the pre-ov intralipids cause I'm not risking another chemical!! And feel like we can only continue on this till Sep (been on this treatment for about 15 months).
I actually had my intralipids after ovulation (day 17).
Hope this makes sense (writing on small phone screen)

[billy15]

anna been on the complex plan

[Tumtimes1]

*Billy15 the fact that the lines are as a dark as the control line is a very positive thing. On the one chemical I had amongst my three MC's, - the line was always faint.
Also for me, I have had cramping on all 5 of my pregnancies. This one (where I am 20 weeks now) I was popping paracetamol to try to help. I remember I had to actually sit down. major period pains.

I think the HCG test will help but the scan will be the most definitive. How far are you date wise? Must be over 4 weeks now? xx

[billy15]

Thanks tumtimes I'm 5.4 weeks now. The temptation for me is to do another preg test next week as I think levels can drop quite slowly.

Have you ladies been to dr s for your first scan or gone local? Some of you seem to have had scans at 6 weeks but when I ask they say 7 weeks at earliest.

[karryk]

Hi all :)

Anna - I'm about to start on my second cycle with the steroids :)

Big hugs to you, Tina xx

Wishing everyone a lovely sunny weekend xx

[Drttc]

Hi Billy- just doing a quick scan and see you're 5 wks 4 days. You could go for a private scan instead of HCG? At this point they would be able to see the gestational sac and fetal pole. If you're very lucky you might see a heartbeat (I did) but that's not to be expected. A scan is likely what I would lean towards at this stage. Some people might discourage it saying that if you've got your dates wrong, or if baby is measuring behind, then you can be very upset by not seeing what you expected. But if your certain on your dates and feel informed enough- I'd go for it. But I'm a total control freak lol!

[billy15]

thanks drttc did you have your first scan with Dr S? I can't see him until I'm 7.4 weeks but I could have a local private scan next Sat when I'd be 6.5 weeks.

[Seekingmiracles]

Hi ladies!!
Massive congrats tum! You must feel so relieved!!

Billy - I know it's scary but hang on in there. I think you should also try to have a scan. I had one at what was 6 weeks on NHS but they dated it as 5+4 and saw a teeny hb. Thankfully bubs caught back up to my dates (and plus a day!). Did worry me that it wasn't measuring as it should but was reassured my the nurse (who I've come to know pretty well, sadly) that as that early stage it's quite hard to accurately date as they're so small.
Could you try an NHS scan?? Tell them you've had spotting and cramps etc and they should see you.
More importantly - look after yourself, take it easy and stay positive

[Drttc]

Hi Billy- no it was a private scan! I agree with Seeking about getting an NHS one by saying you've been spotting. The earliest they'll see you is 6 weeks so if you try to book that it should work out!

[annaif]

Hi everyone, hope you've been enjoying the sunny UK weather- we were in Spain for my 40th b'day and ended up stuck under torrential downpours for 3 days solid, ugh!

Billy, have you managed to get a scan booked in the end? Thinking about you...

I got my first BFN today, testing for the first time with a frer; wasn't surprised in the least bit as I haven't monitored ovulation with temp or opk's and didn't really feel like I've ov'ed at all.... rubbish.... I hope all the steroids I took are not for nothing if OV never happened....
xx

[Drttc]

Happy birthday Annaif! Sorry about your BFN :( As for the steroids Dr S believes they have a cumulative affect so a BFN month wouldn't be wasted!

[fourleafclover82]

Hello, just found this thread as Snoopy kindly let me know about it. I've just found out I'm pregnant after having had two consecutive silent miscarriages both at 11 weeks. I booked myself in to see Dr Shehata two months ago and first appointment is tomorrow! Didn't expect to be pregnant when I was going to see him and wonder if any of you ladies have any experience on turning up pregnant before any tests were carried out!

Thanks for listening X

[Drttc]

Hi Fourleaf, I'm sorry to hear about your losses. Congratulations on this pregnancy - and I hope this is your take home baby! Loads of women have gone to Dr S already pregnant (we've had quite a few come on the thread) and from my perspective it generally tends to work out similarly to those who were with him before conception. I'm not sure how he handles not having tested your blood previously though... Let us know what he says!

[annaif]

welcome to the thread fourleafclover82!
And good luck for the appointment today- I am sure he will put you on a suitable plan and make you feel more confident in it all.
Let us know how it goes!

[annaif]

and thank you for the b'day wishes ddtc!! can't say I am particularly excited about the whole turning 40 malarkey but I hope the plan we're on now will make a difference sooner rather than later x

[annaif]

drttc- doh!

[Seekingmiracles]

Hope you had a lovely birthday Anna, sorry it was a bfn but as Drttc say, it has an accumulative effect, so hopefully it won't be long.
Good luck fourleaf, I can imagine that Drs will still test you but maybe put you on the high programme initially until he gets the results back. That's likely to be prednisolone and intralipids at 6 weeks.

I seem to have developed eczema - something I've never had before! It's driving me crazy, it's so itchy! And under my arms so can't even wear deodorant! Lol! Thankfully I'm not normally a smelly person!

[fourleafclover82]

Hi everyone. So I'm out of my appointment with Dr S. Don't really feel the euphoric feeling I was hoping for. Had built it up in my head for the last two months and now feel a bit deflated.

He was nice but rather confident and very disinterested when I tried to tell him about advice I had been given by St Mary's. At one point I had to ask him if he could let me finish my sentence!

He has put me on 25mg of pred and the progesterone and will test me for nkcells. But because I'm pregnant they can't do the fancy putting the cells into a pregnant state to see which meds I respond best too.

Feel rather nervous about going on pred not knowing any results but this was the risk I took by getting pregnant I guess.

Then he wants to scan me in two weeks time and then my results should be back then. He said if they come back negative then I can choose to take the pred anyway.

I think it's the difficulty with being given the freedom to choose a treatment plan!

[Seekingmiracles]

Sorry you haven't come away feeling as you thought you might have fourleaf.
DrS is generally pretty dismissive of most things outside his practise. I suppose it's because he knows how he likes to treat his patience and quite often that's different to how other Drs work. But he is brilliant, the more you see him the more you'll warm to him.
I'm glad you're on some medication now, hopefully it'll be the right thing for you. When it comes down to making the next decision I would just wait and see.
I was given a choice regarding some of my medications and I decided to go with the more aggressive route, despite not necessarily needing to, just in case. At this point I'm not putting anything down to chance.
Let us know how you get on at your next appointment. And if you need support between now and then just shout. We're all at various stages in this journey.

[Seekingmiracles]

Oh and btw we open our envelope!!! Can't believe we did it as I was adamant I wanted a surprise but we are having a girl

[annaif]

congrats seeking!! lots of girls in the thread :)

fourleaf, I hope you feel a bit more settled with your decision this morning- have you already popped your first pred pills? It becomes less stressful once you're on the meds as it makes you realize that it's actually not detrimental- you still feel like yourself and not like some science experiment (which is how I felt the days leading up to taking my first pred cycle, until I actually started taking them)

Also, if it's any consolation, my GP didn't hesitate to prescribe me pred and progesterone after showing her the Coventry letter (as I am mixing+matching the two approaches by Shehata and Coventry) and she actually said to me that it's quite common to prescribe pred in pregnancy (in this dose) for various reasons.

I think one lady in the FB support group mentioned that it's prescribed for acute morning sickness as well (don't quote me on this as I may be wrong)?!

I think it's very positive that he's given you the choice- it hopefully means that he's not overly concerned about you being in a "high risk" category
But I can imagine that having the choice to yourself can be a bit of a mind f*ck
xxx