TTC or pregnancy on prednisolone or similar part 9

[sarahs999]

Oh dear - we reached 1000 posts on thread 8 without noticing! I hope you can all find this. THis is a positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

Links to earlier threads:

Part 8: www.mumsnet.com/Talk/conception/a1492407-TTC-Pregnancy-on-Prednisolone-or-similar-part-8#33842381

Part 7 www.mumsnet.com/Talk/conception/1452035-TTC-Pregnancy-on-Prednisolone-or-similar-part-7

Part 6 www.mumsnet.com/Talk/conception/1419032-TTC-Pregnancy-on-Prednisolone-or-similar-part-6

Part 5 www.mumsnet.com/Talk/conception/1391787-TTC-Pregnancy-on-Prednisolone-or-similar-part-5

Part 4 www.mumsnet.com/Talk/conception/1366323-TTC-Pregnancy-on-Prednisolone-or-similar-part-4

Part 3 www.mumsnet.com/Talk/conception/1348773-TTC-pregnancy-on-Prednisolone-or-similar-part-3

Part 2 here www.mumsnet.com/Talk/conception/1323594-TTC-pregnancy-on-Prednisolone-or-similar-part-2

Part 1 here www.mumsnet.com/Talk/conception/1236324-TTC-pregnancy-on-Prednisolone-or-similar

I think I would research all of the main immune/ivf clinics. I know that dr g, zita west, ARGC and care are the main ones but they all test for different things and have varying treatment plans/prices. I didn't want to go down the humira route so that was one of the reasons I chose mr s.
As duggs said it all really is down to what suits you and at the end of the day so long as you get your baby who minds how we get there!

Ari and duggs and sue
Thank you for taking the time to reply. I'm feeling guilty as I tend to post messages via iPhone which means I am more hurried than I would like to be (and I get annoying typos by accident!).

Sue, I am particularly touched that with all the sadness around you that you have still taken the time to sympathise about my mother and give your views to me.

I am going to take the weekend to ponder and plan our next move. I'm very emotional - AF still hasn't turned up so I have PMT x 100. Poor DH is likely to get earache tonight from me waffling on in my sorry state. He always gets it in the neck when I'm emotional - I tend to lash out at those I'm closest to and contemplate the future and greener grass too deeply....

So, hopefully my mojo will be back next week! Meantime, thanks ladies for being so supportive and sharing your knowledge. I can see I'm going to need to get my Dr Beer book out again!

Have a lovely weekend.
Emma / coopde xx

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Hi all. Hope everyone is OK. Just a quick post from me to say I had another scan Thursday and despite me thinking once again it would be all over Dr S said 'and there's your baby'. I was shocked. It measured 9.1 and had a strong heartbeat. The twin that he saw had disappeared so I guess I was very lucky 2 have 2 chances. This is the furthest I have got apart from chromosone issue and of course my DS. My next scan is in 2 weeks time so fingers crossed. The only difference in the treatment is that I had fragmin up to 7 weeks and then I ran out. At the same time blood tests showed I did not need it. I have also had intralipids at 4 and 8 weeks and I have been on hydroxy for about 6 months.

I hope anyone going through a bad time of it is OK.

Ari I hope you are OK. I haven't had any additional tests but out of 12 pg's I have had 1 success so whatever issues I have shows that my success rate was less than 10%.

Welcome to all newbies. I hope this thread provides with all the answers and support you need.

To all TTC's. Fingers crossed that you will all get your BFP soon.

Sorry about the previous post DS running trains all over my keyboard.

Hello, quickie from me too as I'm just trying to get organised to go away on holiday in the morning. Can't wait! Off to Mallorca for 10 days.

Will be thinking of you on Tuesday Sue, I hope you are holding up OK.

Coopde, I'm sorry your IVF didn't work out and not surprised you are feeling emotional and fed up.

Abney, great to hear all is still on track for you. Mr S considers 9 weeks to be a pretty good milestone doesn't he?

I am 14 +3 now. I can hardly believe it. I guess that means I'm in the second trimester. I meant to update the list but I've just had the most horrendous headaches coming off the pred and haven't had the brain power for much, which is why I've not been posting much. I hope they don't continue much longer and spoil my holiday. I've been off the pred for a week now and they are still pretty painful. I hope there isn't any other reason for them!

Sending love to all. I will try to check in from my holiday when I have internet access. x

A quickie from me too but just wanted to say great stuff to kittens and congratulations on the second trimester! Go and have a lovely holiday. I remember how my holiday loomed at 17 weeks for so long in the run up - was just thinking please let me get to that stage and still be pregnant. Couldn't quite believe it when there I was on the beach, still pregnant. Take it all in when there you are on your beach.

Sue my thoughts are with you for the week ahead. It's so good you can look ahead even at such an awful time. I guess that's something that helps you keep going too.

Abney, so very pleased you had another good scan! Nine weeks is an excellent sign.

Coopde that's a real shame about the ivf, so sorry to hear that.

Newbies that I've missed - hello!! Sorry to see you're here but youre in the right place for support. More and more of us are having success with the treatment and that can only be a good sign!

Love to all

Oh buster too! Great news about the scan abd that everything was ok!!

Happy holidays kittens! Have a fab time. So pleased all going well for you, and you too abney.

sue I have been thinking of you along with everyone - I think you said scarlet's funeral is on 16th? Sending you and your family all my love

Hi to coopde and all the other newbies I haven't said "hello" to before

I have been reading the board a lot but have not had much time to post. Had a horrific shock with little ds last week - we had been discharged from nicu and home for 4 nights when he stopped breathing while I was breastfeeding him. He was blue and floppy and Dh and I thought he was gone. Luckily I had done a resusitation course in nicu so I did mouth to mouth while Dh called 999 and by the time the paramedics arrived ds hard started to breathe again. Another three nights in hospital and the diagnosis seems to be a type of feeding apnea that can affect prem babies with reflux.

I have had a pretty hard time coming to terms with what happened. I was fine for the first couple of days - just adrenaline I guess - then the shock set in this week. I don't mean to upset or scare anyone with this story as it is pretty much your worst nightmare after such a struggle to have a baby - I guess the positive thing is that the CPR video I'd watched had stuck in my mind and if that encourages anyone to do a life support or first aid course then that would be great!

Ds is asleep on my chest now - he hasn't been left alone for a minute since we got back from hospital. Luckily he likes x factor

Jesus, PQ, that is the actual worst nightmare. Have they said if there's anything you can do about it? Such an awful awful shock it must have been. What did they tell you to do re resuscitation? Thank god you'd done the course.

pq just wanted to say well done on the resuscitation, you must of kept a clear head. I am sorry you found yourself in that position though. Hope the little one is OK

PQ thankfully you'd done the course. Poor you can you have anything else thrown your way? I hope things are looking good for you all now. I suspect you'll be feeling the after shocks for a while to come yet. No doubt there is a thread on here for people who've experienced what you did. Big hug x

Bloody hell PQ you must have been absolutely terrified! I find it terrifying enough when im doing it at work and that's without the added emotions of it being your very own precious baby. Well done for keeping your head and getting on with it. I hope everything settles down now and DS remains in perfect health. Xx

hi not really been on here much as i am still waiting to begin ttc, feel a bit in no mans land at the moment. im getting married in december and its looking like, the way my cycles are going, i will ovulate while we're away on 'mini-moon' so i think i will make a start then.
but i must say i am completely terrified. there is such a mixture on here of happyness and heartbreak and im scared to begin the journey. im not such how some of you have coped especailly sue, oh and pq wot a dreadful shock you had. you are all amazing.
what if this doesnt work for me? i just cant shake the feeling.

cartoon bit of advice from one of the 'old timers' if it's not working for you within 6 mths then look for further testing dr gorgy or dr taranissi or dr ndwuke as dr s only does very top line testing ! He won't be upfront about the other options but a few of us on here are learning the hard way am afraid and still learning. Hopefully you fall into lucky quick camp but if not dont hang around he will offer carrots of hope but be strong not long for you now and mini moon conception sounds idyllic !

Just popping in to say I will be thinking of you, Scarlet and all your family tomorrow, Sue. X

PQ how utterly terrifying for you. Hope your lo is ok now and you are all starting to recover from the shock.

cartoon sorry that you are feeling daunted by everything at the moment. Duggs' words of advice were very sensible. There is a great deal of happiness on hear but also heartache and sometimes in equal measure. I didn't think I could go through it all again after my 5mc in July but I keep telling myself that it is those that don't give up that get there in the end. Look forward to your wedding and who knows what your mini moon may bring?

kittens have an amazing holiday.

sue - will be thinking of you tomorrow.

cartoon fingers crossed for the mini moon - and most of all, have fun trying and don't let TTC take over the precious honeymoon period! Enjoy it!

PQ - thank goodness for your first aid knowledge. Your experience sounded horrendous, I bet you can barely relax let alone sleep.

I had a better weekend (though not heard from my mother!). I booked to see Dr G in a few weeks time - I hope his service is better than first impressions from the switchboard! Starting to doubt whether I am doing the right thing! AF arrived on Saturday, so Ov sticks at the ready and hoping for a miracle as often hear of people falling pregnant naturally after ivf.

Sue - I'll be thinking of you tomorrow. xx

Hi everyone.
I have been reading, but have not had much free time as of late due to work/household commitments/issues.

sue my heart goes out to you and your husband/family. Scarlet is a beautiful name and I will be thinking of you tomorrow.

Welcome to the newbies and I am sorry that you are finding yourself here, but this lot of girls are so supportive and helpful. It really helped me to find a group of ladies to relate to/who understand me/my concerns and my mentalling.

My update: well, after our 20 week scan a week ago we took the plunge and told my work. I am up for a promotion and was so scared of losing it that I became a master of bump disguise. I have not felt any movement; but at the scan I was told I had an anterior placenta- which might explain it. Oddly, we've been booked in for another scan on November 5th- so, I am a bit concerned; but surely if there was a problem they would have told us. I am hoping it's just a clerical error; but we're happy for another chance to see baby between now and 40 weeks. (the long wait) Am crossing fingers that I will start to feel movement soon. (and that my emotions will calm down.)

Sorry I am so hit and miss; thinking of you all,

Hello, I've been reading back on the thread and wondering if I can pop my head round the door with a couple of questions?

But first, we haven't 'met' but I wanted to send Sue my very best wishes for your beautiful daughter's funeral tomorrow - something no-one should ever have to do. I hope the day gives you some healing and peace.

I was hoping someone could tell me a bit more about prednisolone-supported pregnancy. I am currently 7 weeks pregnant on our 8th donor egg IVF cycle, with intralipid, clexane, antibiotics and 25mg prednisolone. Todays scan showed the baby developing very slowly, almost 2 weeks behind. Some frantic googling reveals the very very low chance of it ever catching up - ie, I'm most likely heading for a miscarriage. The clinic has put me up to 40 mg pred for the next 2 weeks. I wondered: whether anyone has any experience of a struggling embryo being able to get it together on a high dose of pred; and whether anyone has any tips for managing such a high dose - I haven't been on it before and don't know what to expect.

Good luck to all of you on your journeys...

Evening all. I just dropped in on the thread for the first time in weeks to see how you are all doing, only to see sue 's sad news. Sue, I'm so, so sorry to hear what you have been through.

If there's a London meet-up, I'd like to join if ex-threaders are welcome.

I'm having 6 months off treatment after the first half of this year having 3xsuperov cycles, 2xIUI and half an IVF cycle (stopped halfway through due to a bad reaction to the drugs) one after the other, plus 6 months of steroid treatment (and as some of you may remember a bad smear result at the end of it). I have my first retest of the smear tomorrow, which I am a bit nervous about, but otherwise I am feeling really good. It is wonderful to have a break from hormones and steroids and to feel like myself again. I just hope that my baby is out there somewhere.

sue sending you lots of strength for today. Welcome new folk. Not sure i can help re catching up with development tbh? Someone on here may know but don't want to offer false hope. co if there is a bedside manner competition dr S would win hands down. He's very front of house if u know what I mean? Dr G is not. He's also difficult to understand with a thick accent. However he offers more in depth testing so I kept saying that to myself when trying to listen. Best move for me as he discovered new issues that dr s isn't even aware of. If dr G finds nothing don't be too harsh on yourself you r just looking for answers. Meet up in London sat 27 oct south bank exact venue tbc

duggs would you not have bothered with mr S in hindsight?

coope thats good advice i must try not to get too caught up in it all and forget to enjoy life especailly our first few months as a married couple.

sue you seem to be a very brave strong person. so im sure you will get through today.

i worry that my nk cells seemed to be quite a lot over the result he considers to be very high. but i guess i have the same chance as anyone else on this.
i guess this means ill never have a successful pregnancy without the treatment? so id better get saving for any future children we wish to have.

previously weve been lucky and fallen pregnant quickly but i guess the steriods might affect that? also we usually just sort of go for it as soon as af has finished, but also make sure we dtd when i know im ovulating ive never wanted to miss a chance so we would sometimes dtd everyday. im wondering if this might not be the best approach this time though? any tips?!
also should i stay off alcohol? obviously i wouldnt drink when pregnant but if i wasnt?
sorry i have loads of silly questions!

sue thinking of you and baby Scarlet today xx

PQ Words fail me, thanks to all that's listening that you did the resus training and what a horrible shock you've had! Thank goodness your little boy is ok, and poor you for such a bad time. Big hugs.

euro (with a new name?? love it!) welcome back! So pleased to hear you're feeling relaxed and rejuvenated, and echoing your wish that your baby is waiting for you.

Welcome cartoon and mo - hope the wealth of experience the ladies have on here can help you!

abney So good to hear of your scan, sounds like all is going exactly as it should do. Excellent news!

coop Extra testing can never be a bad thing - remember you don't have to take anyone's advice, but it's good to know what you're playing with, if you know what I mean. I've heard Dr G's 'bedside manner' can leave a lot to be desired, but that doesn't matter - you are just getting tested, so that you can then make informed choices. Hang in there :)

Nothing exciting to report here, seeing Mr S again tomorrow but doubting he will have anything new to say with my test results and I've no doubt the latest miscarriage will be attributed once again to my age. Ho hum.

/waves to everyone, and kittens hope you're having a fantastic holiday.

Arian I forgot about the namechange - it's just for a Halloween theme on another thread!

It's interesting to see that so many on this thread have moved on to additional testing with Dr G. We went to see him at the start of the summer, but couldn't really decide which extra tests to go for initially, so typically for us we have done nothing yet!

Thinking of you today sue.

Mo welcome to the thread but so sorry you are having this uncertainty with the pregnancy. And I guess there is no way they could get your dates wrong either. I do have a friend who found the medical profession were adamant she was two weeks behind where she should have been, due to the size of the foetus, but she knew for sure she wasn't. The baby was fine and just small all the way through. But I know that you have probably looked into this a lot.

Pregnancy on 40mg of Pred isn't too bad at all. I mean the Pred ain't much fun, and you might get a moon face, but it's nothing to worry about.

Welcome back cartoon and sorry you too are having this stressed. As one of Mr S' success stories I can only vouch for him but it seems, from what we have found out here, that people who fall pregnancy relatively easily have more success on his programme than people who find it difficult or start to find it difficult for other factors like age or similar. Not that any of us are very young! As for worrying about your levels - I was in the top 5% of levels he ever sees in the clinic and I had a successful pregnancy on the second round of treatment (the first was a mc as it just didn't grow - could have been 'one of those things' could have been the NK cells). It was my fifth pregnancy and he was pretty sure I had a very slim chance of having a successful one without treatment. The steroids did not affect my chances of getting pregnant. Oh I also DTD every day (from around day 8-10 until day 20 - exhausting!) for three times of trying and all three times got pregnant straight away. Give up alcohol?! Are you mad? Although I did limit myself to three drinks on a night out just in case and of course stopped when I got a BFP. What stage are you at now?

I always thought I was going to be that one person who it didn't work for too. But it did. But now I am worrying that I will be that person who has a terrible tragedy etc etc so really we just can't win. I know it is easier for me to say now I have a baby. I do hope you all get where you want to go.

As for having another one DH has never been sure about more than one and the treatment worries him. However the treatment really isn't that bad at all, once it works! I have said that if we chose to go down that route I will allow myself three pregnancies before giving up. Having had recurrent miscarriage I feel I could cope with three - weird as that sounds to anyone who hasn't been through it! I know that there are people on here who are trying for number two and more so you never know when I might start to feel that way about a second one too, but at the moment I feel very lucky to have one and I know what it feels like to be that person thinking - will I ever be able to become a mum, so am grateful to be here now.

Thinking of Sue today and love to everyone else xx