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Conception

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Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

999 replies

Seekingmiracles · 13/05/2016 20:48

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies! Smile

OP posts:
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11
sunnyday01 · 10/02/2017 21:57

Yes had my intralipids and they were fine, as funny being in a room with other people and no one really spoke to each other either!

Hoping this week will go quick, advantage of having a child is that I don't have much time to think about it this time! I think once we've had scan next sat we might be in a better position. These next 2 weeks are my danger weeks as all my mc have started between weeks 5-7.

Snoopysimaginaryfriend · 11/02/2017 20:37

I know what you mean sunny, I always try to smile when women come into the room but I guess everyone is there because they're struggling so it's a bit awkward to ever strike up a conversation. 'Hi, I'm so and so. What's your problem then?'.

What day is your scan booked for?

I have an NHS consultant appointment 9am Tuesday morning (no idea why and then DH is working overtime Tuesday night so Valentine's Day is a bust for me) and then last appointment (fingers crossed) with Dr S on Thursday. I'm petrified the scan won't go well. I should be sixteen weeks next Friday but I have an anterior placenta so no movement felt yet.

Rosa27 · 12/02/2017 19:09

Sunny and Snoopy - it's lovely to hear about things going well.. Forever may that continue 😊 I spoke to the new Louise.. She think Mr S would want to retest me if I saw him again .. I stopped taking hydroxychloroquine due to side effects though so apart from intrallipids there's nothing else I could do. Really not sure I can go through all again but suppose I had the D&C less than a week ago. I feel so wiped out today. Wondering if should get some iron supplements. After 4 days of no bleeding after the op I then had awful cramps and quite a lot as well as clots. Sorry tmi but it reminded me it's not really an easy option. I hope I will find out in another week what the result of the test on the pregnancy tissue shows. I'm thinking if it shows nothing wrong it would perhaps encourage me to give things one last shot with mr s throwing everything at it. But of not maybe it's a sign the quality of my eggs are not so good now. Hmm decisions decisions

pickledsausage · 13/02/2017 07:46

Hi everyone,

Snoopy directed me over here, thank you! It's so good to read some positive stories.

I had all the blood tests a few weeks ago and had the results that I have high alpha NK cells and low folic acid absorption inherited from both parents (not too much of an issue apparently). Anyway I'm now on day 4 of preds and hoping for a bfp soon.

Stats

Age 31
TTC #1
Cycle 9 (since last miscarriage but have also had an op to remove a large ovarian cyst so I'm hoping now that's gone it might happen quicker!)
AF due 24 Feb

I'm off booze and caffeine, eating tonnes of veg and doing lots of yoga & walking. Surely it can't be long now 😊

sunnyday01 · 13/02/2017 13:43

yes it was a bit like that, we all kind of smiled at each other but didn't really say anything. I was the only one with a book the other 3 were all first timers and were just sitting there.

Scan is this Saturday, so hopefully all will be well. i feel surprisingly clam at the moment. Although i am slightly worried about how we are going to afford all the treatment and another year of maternity as we are still catching up from last time! i'm sure it will all work out but it is stressing me out a bit.

welcome picked sausage, hopefully you will find this a place to share how your feelings an your journey. A lot of us have been through it already and on the ride a second time! Hopefully you get a positive soon x

Snoopysimaginaryfriend · 13/02/2017 15:11

Hi pickled, glad you found us! Fingers crossed for this cycle!

sunny I know what you mean. The first thing DH said after the first scan was 'we need a bigger house'. Just seen five this afternoon and we have three viewings booked on our place, my head is spinning! He then told Edie she had to start walking and, bless her, she's holding up her end of the bargain cruising around everywhere haha

rosa I found my d&c really draining. I know people say it's a minor operation but I think any general anaesthetic is hard on the body as well as the emotional toll it takes. Be kind to yourself, you don't have to make any decision right now x

sunnyday01 · 13/02/2017 16:04

LOL snoopy - sounds like its all go! We luckily don't need to move house but we are just in the process of having a downstairs extension to our kitchen/diner to create more room for toys!! Toby isn't walking yet - i'm actually quite concerned as he isn't crawling, pulling himself up, crawling or walking and hes over 1 now. HV thinks he's just very lazy but its hard when it seems every other baby is making some kind of movement. I really hope he is moving by the time this one is born (assuming we make it that far!)

Snoopysimaginaryfriend · 13/02/2017 17:11

Honestly sunny I wouldn't worry yet. My niece is six months older than edie, she didn't start crawling until she was about a year old and even now she's only cruising. It's so funny because they will stand next to each other holding onto the sofa and edie is so blond and blue eyed and my niece is so dark but they have the same facial features. However, at edie's age my niece would happily sit and look at a book with you and was very verbal whereas edie just wants to chuck books on the floor or chew them. They are all different and they will all get there eventually.

Loopyaboutmy2boys · 18/02/2017 06:28

Hope it's ok to post here. My brief history is i had 2 boys no trouble in conceiving and aside from their births all was fine. Then went on to have 12 miscarriages, one was a MMC 6+4 and the rest were between 4- 5 1/2 weeks. Went to Coventry and losses continued. Then got an NHS referral to Mr Shehata's clinic at Epsom Hopsital. My NK cells were high ( but not crazily so - the level was about 250 - typing this in the dark in bed and paperwork is elsewhere!) and the activity level was 0.5 I think. So not high on the activity.

Am fretting though as through a wonderful group of RMC ladies I know that if you go to Shehata privately he will do an extra test where he sees if pred is enough or if you need intralipids or IVIG.

We've just had our first cycle ttc again and as always have fallen pregnant (for some unknown reason I am extremely fertile and get pregnant every time). I have been on the pred and fragmin and aspirin and all the other usual stuff. I am 4+6 today and have been testing daily and the lines have progressed amazingly, and yesterday's frer had the test line much darker than the control line. My last 3 early losses I had tested daily and realised that the lines never progressed past 13-14 dpo and then would gradually weaken before the bleeding started. So I'm now wondering, as you all have a lot more knowledge than me, would i be safe to relax a bit yet? Have the steroids done their job and subject to chromosomes being ok we might be over the worst? Or could we still be at risk of a loss if the pred isn't enough and I needed intralipids? I'm just not sure how to know )or when) that the pred has definitely worked, and not sure if this is coming out clearly enough!! Hoping you get what I mean lol! I just don't want to get my hopes raised by getting this far, if it turns out that pred only keeps the killer cells at bay for a short while, i just don't know enough about it all. And don't know if there would be a direct answer to this based on my NK results, I'm hoping the activity level means I've good odds for being on just pred, as I've seen people getting results as high as 2.0...

Snoopysimaginaryfriend · 18/02/2017 13:31

Hi loopy, I'm so sorry to hear you've been through such an awful time.

I've only had three miscarriages but I'm sixteen weeks with my second. In both the successful (presuming this one continues to be so) pregnancies I didn't manage to have intralipids when I should have done ( at 4,8,12,16 weeks). The first time I was on holiday when I got my bfp and the second time I just didn't know I was pregnant. Each time I only had three sets of intralipids. DH regards them as 'optional and expensive extras'.

It may be that taking the pred from ovulation instead of from bfp, as Coventry recommends, could be enough for you. I'm not familiar with Epsom hospital. Is it me shehata's team that you will be seeing now you're pregnant?

Loopyaboutmy2boys · 18/02/2017 14:21

I should be going back to see them as they like to scan you and see you until 16 weeks, but I shan't be going as it takes 3 hours on 3 trains for me to get to Epsom, and then the same back again which is a big stressful upheaval and would mean DH taking precious days off work to do the school/nursery run. So I'm having an early scan locally on Monday and then have another booked for when I will be 6+4 and will hope that this is ok.

Snoopysimaginaryfriend · 18/02/2017 17:36

Ah right, that does sound like a tricky journey.

I don't really know how it works because I kind of gave up on the NHS and didn't go my local hospital until I'd had my 12 week scan privately. Would you're local Early Pregnancy Unit support you, offer reassurance scans etc?

Snoopysimaginaryfriend · 18/02/2017 17:37

sunny any updates? Really hoping all went well for you x

tiggykate · 18/02/2017 17:54

Loopy, tentative congrats on your bfp. The lines getting darker sounds like a really positive sign. I'm currently waiting for my appointment to see Shehata at Epsom Hospital so haven't tried the treatment yet. However from what you've said this latest pregnancy sounds like its going well. It's really important to do as much as you can to minimise your stress levels. Could you ask your local EPU to monitor your HCG levels by blood tests for the next week or so? If they're doubling in 48 hours (or even increasing by 66%) that would be a really good sign this pregnancy is not going the way of your previous early miscarriages.

Fingers crossed all goes well this time. x

sunnyday01 · 19/02/2017 08:27

Hello! Scan went well thanks, was expecting to be 6+3 and was 6+5 so all good, saw and heard he too. Not out of the woods yet but all ok so far.

Snoopysimaginaryfriend · 19/02/2017 14:38

sunny amazed news! So, so happy for you! One day at a time.

I have to keep repeating 'today I am pregnant' to myself because I'm not feeling any movement yet. Dr S said with the anterior placenta again I probably won't feel anything until 20 weeks at the earliest. I am very gassy though Blush

tiggykate · 19/02/2017 18:00

sunny that's fantastic news :)

QueenGiggles · 19/02/2017 20:01

Just stumbled across this thread and am still currently trying to real through it, can being on prednisolone affect ttc? I k ow really high doses can but my consultant told me it was ok and to go for it lol I'm confused now

QueenGiggles · 19/02/2017 20:05

Oh wait, ignore my comment, I know that they can be used to help conceive too! My mind is rubbish today!

Loopyaboutmy2boys · 19/02/2017 20:17

I'm on pred because I've been diagnosed with high blood natural killer cells and have had 12 early losses after having had 2 very normal sons. So for me the pred is what is keeping this BFP sticky, any side effect is worth it...

QueenGiggles · 19/02/2017 23:17

Oh Defo in that case! Sorry if my message came across wrong, when I 1st came onto thread I read wrong and panicked thinking it could cause problems tho I know this isn't the case as I looked into it all when I got put back on it 3 months ago, been having 1 of those days and all rational thoughts went out the window! Sorry to hear you've had so many early losses, hope all goes well this time Flowers

sunnyday01 · 20/02/2017 09:11

Thanks everyone, i'm not sure if its because its second time around or because it was unexpected that I feel a lot more relaxed about it this time.

However I am finding that the steroids are making me crave things I shouldn't be eating like Nando's , Mc D's, chips, curly fries, wedges etc etc! I suffered with Gestational Diabetes last time and i guess it wil be assumed I have it again so I may as well enjoy eating 'carby' things for a few more weeks before the testing comes in at 12 weeks to monitor my blood sugars!

Loopyaboutmy2boys · 20/02/2017 09:20

Queen no that's fine, far from it, pred doesn't cause problems from what I gather, other than a small risk of a cleft lip or similar, which I've not heard anyone has had at the doses Shehata uses. It's a miracle worked as far as I'm concerned!

Sunny congrats re your scan, fingers crossed that good news rubs off me later. I didn't get gestational diabetes with either of my boys despite BMI being high, and I craved those foods without any drugs lol, so expect the pred hat makes it worse? I'm on metformin for PCOS and so I think that is almost balancing my appetite out. I had no appetite when on metformin, and the pred has definitely made me have an appetite, but not crazily so at the moment. Does the pred make you hungrier the longer you take it for? Because of my weight, in theory I've read I should be aiming to put on 11-20lb max. With my ds's I put on just under 2 stone each time, which I lost very quickly after they were born, so not sure how realistic 11lb is to aim for!!

sunnyday01 · 20/02/2017 09:52

I find the steroids def makes the need for carbs worse - its all savory stuff though like crisps and chips etc rather than cake and chocolate. I didn't find it increased my apetite the longer i was on it, I just found I had says where I could just eat and eat and then other days i wasn't bothered.

I was lucky first time round, due to the GD i ended up being 1 stone and half lighter after giving birth than i was at 11 weeks! If i could do that again this time I would be very happy, although i would need to keep it off this time rather than putting it back on lol.

Good luck for later, let us know how you get on.

Drttc · 20/02/2017 14:02

Oh my goodness BIG CONGRATS SUNNY!!! So glad to hear your scan went well. Xx

And Snoopy- happy things are continuing well for your lil bump! Xx

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