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

[sarahs999]

First things first - here's the list (sorry free )

I've moved a couple of people - we don't seem to have heard from Hannah at all since her BFP so I've put her in 'status unknown'. I've added Buster and Abney (Abney Im guessing your gestation, feel free to repost the list with the right dates! ). Also moved up Colley who seriously must have had her baby by now. And I have moved myself into second trimester. Clabbage, wasn't sure where to put you - am sorry, don't want to be insensitive so please do add yourself to the list if you would like to.

The babies are arriving!


Stogan - V high NKC - cycle#2, DC#1, Baby girl Ellyson (DC1) born Sunday (EMCS) 11/03/12 7lb13.5.
Digitalgirl - High NKC - BFP cycle#2, Baby boy Franco (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks, Baby boy Arthur born at 40+6 13/05/12 3.66kg
Comedy - V High NKC - BFP cycle#2, baby girl Matilda born DC#2 ? 39 weeks (CS) 14/5/12 7lbs.
Igggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- Baby boy Thomas born (CS) at 38+6 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 40+0 - baby girl Amelia born 7/06/12 (CS) 7lbs
Freelance - TTC#1 V High NKC Thyroid/hashimotos - 4mcs (4th on 1st Pred cycle), Hydroxy, Pred, Intralipids, Cyclogest, . DC#1 - Baby boy Sebastian (ELCS) at 39 weeks 17/07/12 8.11 lbs.
Cheerfulcharlie - TTC#1 V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 40+1 wks EDD 24/07/12 Baby boy born 26th July, 7lbs 5. EMCS
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 38+4
coleyoz - V High NKC. DC#2, BFP cycle2, 41+1 - Baby born??!

3rd Trimester

FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin, 38+2
Mercator - V High NKC, DC#2 37+4 (Pred, Intralipids, Cyclogest) 4mcs (1 pre dd, 3 post - all at 6-8 wks) ELCS 14/09/12
Hopefulfor2nd - High NKC - TTC#2. ? 37+0
dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 37+0
PQ77 - TTC #2, 2 mcs, then DS, followed by 4 mcs - 6-8 weeks. V High NKC (BFP cycle one but mc) 33+0

2nd Trimester

HelterSkelter (IVF and immune therapy) -22+5
Suemays - TTC#2. DD, followed by 6mcs all 6-8 weeks. V High NKC. Superov but this BFP a natural one. (Pred & Hydroxychloroquine) 20+2
Bertha337 - High NKC, 1 ectopic, 2 mcs, est 16+2
GreenOlives - TTC#2 DS followed by 2mcs, 1 ec, 1 chem. High NKC, Pred from BFP. 16+1 Next scan 5th October
Delta10 - High VNKC, 5 mcs followed by DS Pred baby, 1 further mc. Est 16+1
sarahs999 - DC1 followed by 5 mcs, high NKC (Pred), plus clexane twice daily for Factor V Leiden and Prothrombin, aspirin, cyclogest, intralipids. 13+5

1st Trimester

Jemimapuddleduk (33). 3 prev mc's over last 2.5 years between 7-11. Not tested for NK but prescribed 20mg pred, fragmin, asprin and cyclogest on NHS. 12+5
HavingKittens, 4mcs, 2 TOP TS21, 7th pg, 5th SO Cycle, VHNKC, 40mg Pred, Hydroxy, Intralipids, etc. 9+1, next scan 4 Oct.
Buster - 4 mc. VHKC (pred 40mg, lipids, clexane, cyclogest,aspirin) 7+2

BFPs awaiting first scans
Abney (44), TTC#2, SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),- super ov 5+2


STATUS UNKNOWN
Hannah77 - DD born 2003, 3 losses 21 wks, 17wks, 7wks. BFP 25th July

TTC ? ASSISTANCE - TTC 2ND or more

Pinkdragon - High NKC. Pred Daughter (after 4 mcs) TTC #2, super ov.
Arianrhod - TTC#2 DD then 5 mcs 5-9 wks (2 on treatment), V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine) ? super ov
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2 on Hydroxy, -super ov
LJ71 - two older DCs, mc on treatment. SO, pred, hydroxy

TTC ? UNASSISTED - TTC 2ND or more

Iloveblue - under Prof Quenby for HNKC. 2 healthy boys, followed by 20 week loss, 2 early mcs, 15 week loss.
Willitbe - TTC#4 DS, DD, 1 mc, DS2, followed by 11mcs, (5-11 weeks). NKC not tested, TTC #4 (after m/c 12) Fertility cons prescribed pred.
Holldoll - TTC #2 High NKC - Pred, Cyclogest & aspirin. DS followed by 4 mcs, heart stopped around 5-6wk. Mc in March 2012 on treatment. Pred started at BFP.
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Mollieboo - 5 mcs, 1 DS (lost my little angel), high NKC - pred, intralipids, aspirin, clexane, cyclogest

TTC ? ASSISTANCE - TTC 1st

Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, 2nd chemical on treatment/IVF - SO
duggs1976 - TTC#1 -4 mcs all 7-12 weeks. - TTC #1 ? last chemical on treatment/IVF in April. SO
BellyD - V High NKC, MTHFR homo, TTC#1, 5mcs, SO, hydroxychloroquine
Carebear1 - V high NKC

TTC ? UNASSISTED - TTC 1st

ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April - mc on treatment.
EchoJuliet, awaiting diagnosis, Preg 1 -MC 10 weeks (heartbeat stopped at 6w), mc 20w, mc at 8 weeks (heartbeat stopped at 6.5w)eurochick - TTC#1 High NKC, pred cycle 6, had 3 cycles of Super Ov, now on 2nd cycle of IUI No BFP in 20+ cycles of trying
London - High NKC, April - mc on treatment.
picolina - TTC#1 4 mcs, all around 6 weeks. V High NKC MC on treatment
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
Gransol - Seven mcs - all losses between 6 & 7 weeks

[sarahs999]

OK, now that's out of the way will try to catch up with you all.

Sue so sorry to hear that your scan threw up problems. I know Mr Shehata is a bit gung ho sometimes but what he said has hopefully helped? Hope you get the FMC scan and some answers soon. A friend of mine also had this problem (her daughter is fine now) so I've seen firsthand how worrying it can be. So unfair- we of all people deserve a trouble-free ride once we get so far in our pgs.

Clabbage welcome and sorry to hear this pg is not going well. Your posts sound like you're coping well but we all know how devastating these bad scans are. Hope you get some answers sooner rather than later.

Kittens sorry about the nuchal. I've just gone through it all myself and was totally mental about it all so I completely sympathise. I decided that I wanted m nhs one first so that if it was all fine I didn't waste money at FMC (trying desperately to save for maternity now!). As it turned out I didn't go to FMC because I was happy with my results. I think I will always have them in the background though for whenever I'm not happy with what's going on at NHS.

PQ so great that you're still holding on. What's the deal with the worries about infection now? Does amniotic fluid replace itself over time? Do you have to take extra precautions or is it really just rest and wait? You must be so pleased to have got to 33 weeks.

Cornflakes you're being really brave. So sorry you have to go through this again - I hope it's quick and painless for you.

And Mercator you're so close to the goalpost! I know you must be terrified of the op but really I think it will fade into the background once you have that little baby in your arms. Will be watching out for your news (Realise there may be a little gap before you even think of turning on your computer!).

As for me, I had a quick scan and first meeting on Friday with my NHS consultant, who's been with me for years (through all the mcs). Baby looks good; I was most interested in what her take would be on it all as she actively discouraged me from looking into NKCs, saying, as so many NHS docs do, that it's unproven that steroids help etc etc blah blah. Well, the evidence was right in front of her! She was perfectly nice but didn't really go into it. I suppose she can't really. If pushed I'm sure her line would be 'well, you've been lucky'. Yeah, right. Come on lady.

I am passionate about writing about this for the paper and once the baby is here (fingers crossed, all those things) I will be asking her for an interview so I can really grill her about why the NHS isn't more helpful about pointing people in the right direction. It has ended up costing me thousands and thousands of pounds in fruitless treatments/ weight loss programs/ alternative medecine when the answer was out there all the time. Really, I mean how hard is it to form a protocol where you say, 'look we cant condone this approach on the NHS because there isn't a hard and fast scientific proof, but lots of women in your position have luck with the NKC theory, and here are the best doctors in the UK working on them.' St Mary's has a lot to answer for too as they are the ones (well, Prf Regan) who put up the loudest longest fight against NKCs. It was Dr Margara there who laughed in my face when I said I wanted to check my NKC levels and called people like Shehata 'charlatans' and said they were just moneygrabbers exploiting desperate women. That was in 2009 - at that point I'd been told St Marys were the best in the business when it came to recurrent miscarriage and so I believed everthing they said, and put the NKC theory out of my head. If I'd had a healthy disrespect for them and checked out Shehata then it would have saved me from three further miscarriages.

Anyway, rant over! I'm nearly at 14 weeks and this is my first day off the pred completely. My weaning has been absolutely fine - no side effects at all, which I was v pleased about (apart from the mentalling that the NKCs will attack again now I'm off the steroids...). Baby is measuring ahead of dates by about 5 days, which is a first for me - have become so used to those scans where all is behind, heart is slow etc. I'm finding this early second trimester frustrating though - I don't really show yet - only if you look really carefully can you see the shape of my abdomen has changed - and because my symptoms are fading away (thank god) I feel really precariously unpregnant. I know it's fairly normal at this stage but I can't wait til I can feel proper movements and know all is OK on a daily basis.

Next scan is at NLC on 19 Sept when I will be having intralipids too. I have scans pretty much every two weeks until 20 weeks (some NHS, some NLC) so I hope that will keep the mentalling at bay. Good luck to all those with scans/appts coming up.

[LJ71]

Morning everyone

Just a quick post to let you all know that I have been lurking, and my thoughts are with all of you going through tough times.

The appt with Mr S is Sat 22nd to get the results of the ERPC, so I guess I'm keeping quiet as I'm really not sure what we'll decide. Quite daunting when you know you may well make the decision to stop ttc, although that has it's positives. I really want to make my decision seperate from Mr S's advice, who I know will tell me to keep trying as there's always hope (unless there's a medical reason not to).

We really can't afford any more apart from anything else, and that's a horrible basis to have to make this decision on.

Big hugs to you all xx

[Havingkittens]

Thanks for the thoughts on the Nuchal scan. I would love to save myself the money too but I also feel like I want the super detailed scan and be able to have the blood test/scan/results all on the same day so I can find out the odds and decide whether to have a CVS then and there. The two Nuchal scans I have had so far in the past, yes, they could pretty much tell straight away there was likely to be a problem just from the thick nuchal fold and I was "lucky" that they managed to get me in for a CVS that same day on both occasions (but that is not always the case). Even with having the CVS on the same day I still had to go through that agonising wait for 3 days for that horrible phone call to say "I'm sorry, your baby has Down's Syndrome (the second one obviously followed by, I can't believe this has happened to you again.)". I'm so petrified about this. Before I had the last 3 miscarriages my protocol was to go straight to CVS at 11.5wks on the NHS without even having the Nuchal but now that there is the added risk of miscarriage with it I am veering on trying to get as much info as I can before I decide whether to have a CVS and then, if I do, to have it done by the best person in the country with the best scanning equipment to guide them. So, if I go to the NHS scan first it sort of negates any of my reasons for going to the FMC. Also, the same goes for having a scan at the FMC on any day other than Wednesday if I'm going to have to wait to have anything reviewed.

Sue, I'm thinking of you today. I hope you get some positive answers.

PQ, you're doing really well. Hang in there!

LJ, sending you a big hug.

[Havingkittens]

Phew, I've just managed to bring my FMC appointment forward to 26 September so I will be 11+4. I will try to move my NHS one to the following Monday, that way I can get a look in there and see that everything is OK afterwards in the event of having to have a CVS. I'm now wondering if it's really necessary to have a 10wk scan with Mr S, especially as it will most likely be closer to 10.5wks. If I could save myself that money it could help pay for my Nuchal!

[Arianrhod]

kittens why not email Louise and see what she thinks - if you're having a scan (albeit a nuchal one, but that will show what you need for a 'normal' scan too) with the FMC perhaps they'd pass the results over to Mr S. I'm sure he would be happy with the results from the FMC.

[Arianrhod]

sue Just wanted to say best of luck for today, hope things look a bit more positive. And that I know of another pregnant girl who was told at her 20 week scan that there was something wrong with one of her baby's kidneys; they monitored it closely and eventually it apparently 'righted itself'. Fingers crossed all goes well today.

[Buster76]

Hello!

Sorry to hear your news cornflakes and clabbage

sue I hope you get some reassurance from your scan today. Its really not fair to get this far and have that thrown at you. Like others have said you can manage perfectly well with only 1 kidney, I hope the other kidney is a healthy one. I have everything crossed for you.

kittens glad you got your scans sorted. These decisions are so tough especially after what you have been through before.

sarah thanks for doing the list, makes me feel a bit more positive seeing my name up there. Totally agree with you too about the NHS and NKC. I havent quite got there yet but when I do have this baby (!!) I was going to write to the consultants I have seen. The whole process is scary and I have felt quite alone. In the fact of having to research, organise and pay of all your own treatment.

I had some pinky discharge yesterday Really hope its not the start of the end! Rang Louise today, she said to double up on progesterone and stop aspirin. Got scan and lipids Friday. Having scan locally Thursday to see if alls ok. It really doesnt get any easier!!
I was sooo constipated Saturday....I was late for work! Had to say my car wouldnt start, how embarassing?!

xxxx

[FrozenNorthPole]

Hello - hanging my head in shame here as I lost my place on a previous thread and then didn't mark it in the next one, so basically dropped out of touch. Sorry

I just wanted to let you know that baby James was born on the 29th August, weighing 6lb and 6oz at 36+5. I developed sudden severe pre-eclampsia so they induced me; a brilliant med-free birth which made up for feeling pretty dire for the last few weeks of the pregnancy. Sending sticky thoughts for those still in the scary, scary early days of pregnancy and congratulations to those whose babies have arrived! x x x x

[sarahs999]

COngrats frozen - how exciting! I sympathis with the severe pre-ec - I had it with my first (at 26 weeks!). It's not nice. But hopefully that's a fading memory and now you can concentrate on baby James!

[mollieboo]

Hi everyone, haven?t posted for a few days so just wanted to say clabbage so sorry of the news re your scans, its just awful waiting for something to happen when you?ve been told news like that, hope you?re both holding up ok.

sue, am gutted to hear that you?re having to go through so much worry about your baby?s kidney. What an agonising time for you, am thinking of you lots and hope you have had some good news today.

cornflakes hope you?re doing ok, well as ok as you can be.

mercator exciting stuff but I can imagine its nervewracking. I had an emergency c section with no time to think about it, but I guess its very different knowing its coming but as sarah said, will be so worth it when you?ve got your little baby in your arms.

kittens glad you?ve got your nuchal scans sorted in your mind now. Sounds like a worrying time for you but at least you?ve got a plan in place now.

pq glad you?re holding on well and everything is going ok.

free lovely to hear from you. Being a new mum sounds exhausting when he only sleeps in his pram and not at home, but it?s a lovely exhausted I?m sure! Btw I was reading the first thread the other day and you said you interviewed Mr S for a documentary, has anything happened with it, did I miss it?

sarah great news on your scan. Also I think its brilliant that you?re going to write about NK Cells testing and treatment not being available on the NHS, even if its just to guide women like us in the right direction instead of us wasting time and going through heartache that could have been avoided.

lj big hugs to you too.

buster hope you?re ok, this game is hard work isn?t it.

frozen huge congrats on having baby James x

[suemays]

Bad news from me as I went to the FMC today and they said the other kidney is also abnormal and the amniotic fluid is reduced. Looks like we are going to have to make the awful decision of ending the pregnancy as the baby won't make it. Seeing another specialist on wed and fri. To make it worse the baby looked perfect on screen and the right size. It's been really kicking me. Can't believe I will probably have to go through labour all for nothing. Popped in to see mr s and showed him the report and he said to prepare for the worst. Can't believe this is happening. I can't get my head around that my little perfect baby is going to die.

[duggs1976]

Oh sue I really am lost for words. How awful. Absolutely awful news. I don't think there are many words of comfort for you both right now. Is it just one of those terribly unlucky things that happen in life did the drs say? I can't get my head around it do have no idea where yours is at. X

[digitalgirl]

Delurking to say how terribly terribly sorry I am for sue. Such an awful decision for you to make. I'm so sorry. I can't begin to imagine how you prepare yourself for something like this. But please know we're thinking of you. Xxx

[mercator]

Sue. What can I say. I am just so very sorry to hear your sad news. I cannot imagine what you are going through right now. I am glad you will be seeing another specialist and I can only hope they offer you a glimmer of hope. My thoughts are with you at this time. X

[mercator]

Frozen congratulations on the birth of James. Lovely to hear your news! I will try and update the list as my dates aren't quite right. Not that it really matters right now.

Kittens good luck with the scans

LJ could you see Mr S on the NHS if funds are running out?

Clabbage sorry to hear your news and hope you're doing as well as can be expected. Cornflakes same goes to you right now.

PQ hope alls well and lo is hanging in there.

Sarah thanks for updating.

Buster hope lo hangs in there. Thinking of you.

Sorry,if I've missed anyone. Just feel very sad for Sue right now. I am sure I speak for everyone when I say our thoughts are with you.

[Clabbage]

sue I am so so sorry. I can't begin to imagine the anguish you must be feeling. I wish I could find some words of comfort but I know there are none, you and your family are held firmly in my thoughts x

[iggi777]

So sorry Sue, will pray for a miracle x

[GreenOlives]

So sorry Sue life is so cruel sometimes. I don't know what else to say apart from I will hope for a miracle. Thinking of you.

[GreenOlives]

cornflakes and clabbage I hope you are both doing as well as you can be in the circumstances.

frozen congratulations lovely news!

buster hope spotting has stopped.

Sarah Yay for being pred free!

Sorry for not name checking everyone, am on phone and can't check back but love& luck to all. X

[mollieboo]

sue im so so sorry and like the others am also praying for a miracle for you. Thinking of you lots xxx

[batteryhen]

Sue, what dreadful news. I too will pray for a miracle. I can't believe this is happening to you :( much love and hugs xxx

[ChoccyPud]

Oh Sue I'm so so sorry and heartbroken to read your news, after everything you've been through this year already, now this. I can't imagine what you're feeling right now, but just wanted to say that my thoughts are with you this week. X

[Arianrhod]

sue I'm absolutely gutted for you, after everything you've been through I was really hoping this was it for you. Are they saying there's no hope at all, or is this what the specialist Wed & Fri will determine? I so hope there's another answer, something they think they can do for your wee babe. What an absolutely sh!tty thing to have happened, huge hugs to you and your DH.

[iggi777]

It's a good thing you are seeing the best in the business Sue, you will know you have had absolutely everything done that can be done. Stay strong. ()