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TTC/Pregnancy on Prednisolone or similar part 4

(994 Posts)
digitalgirl Mon 19-Dec-11 11:28:12

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!

Part 3 here

Part 2 here

Part 1 here

digitalgirl Mon 19-Dec-11 11:31:10

Dragging list over...

Monday 19th December
3rd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2- 28+2 Due 10/03/12 next scan 30/12

2nd Trimester
Digitalgirl - High NKC - BFP cycle#2 23+0 Due 16/04/12 MW appt 25/01
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 20+1
Comedy - V High NKC - BFP cycle#2 – 17+2 due 26/5/12 next scan ?
Iggi - High NKC & Hypothyroidism - BFP cycle#2 - 16+4 anomaly scan Jan
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP on cycle 3 of Clomid - 15+2 next scan?

1st Trimester
Freelance - V High NKC TTC#1 Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos. MC 1st cycle. BFP#1 8+6 Scan 23/12
Cheerfulcharlie - V High NKC, MTHFR/TTC 1/ (metformin, intralipids, no pred). LMP17/10(Ov'd 3rd Nov) 8+4 Scan 12 weeks
batteryhen - High NKC, factor v leiden. TTC#1 BFP cycle 3. 5+2 Scan 29/12/11
coleyoz - V High NKC. TTC #2, BFP cycle2, 5+0, Scan 28/12/11

Waiting to test
Cherrycheeks - V high NKC, TTC#2/ ov 25th-26th Nov 4th cycle of pred
Snoopygirl - V High NKC TTC, #2, testing 17th Dec
Havingkittens - Upgraded from High to V High NKC TTC #1, testing 26/12
duggs1976 - High/V High NKC - TTC #1 - Superovulation cycle2

Waiting to ovulate
Suemays - V High NKC TTC#2.
buster76 - V High NKC, Factor V Leiden.
eurochick - High NKC, superovuation cycle 1, pred cycle 1

Hopefulfor2nd - High NKC TTC in New Year
PQ77 - V High NKC TTC #2 again from January (BFP cycle one but mc)
ScooterChaser - V High NKC - TTC#2
ChoccyPud - V High NKC - (chem pg cycle 2 of pred (only found afterwards), mc @c.5 wks cycle 4 of Pred, confirmed @6wk scan) TTC#1, review w/Dr S 14 Jan.
Arianhod - V High NKC, MTHFR homo, hypothyroid, TTC#2
Lemonsherbet - awaiting results
Breezyweezy - V High NKC - TTC#1 from January
AandRmum - High NKC

duggs1976 Mon 19-Dec-11 12:56:22

Hey found it! Morning everyone. Spent weekend in Solihull with 7 mth old and 2 old friends. Was good to see them, but do you know what. They don't REALLY want to know the details. They don't really want to hear how I really feel. Nail on head. They RL people want you to be fine , better over it all- patient Feek off -28 mths ttc and 3 mc and 43 conflicting diagnosis - patient doesn't even come close! Q throw my drink over them both. Ahhh exhausting. This is why we r so addicted to this thread and meet ups. Because we all on here DO want to know. We drink it all in and get strength and energy back. Hope people are ok tick tock - hurry up January so at least we don't have to pretend in january as everyone is fat, skint and depressed anyway so we will just blend in grin

Arianrhod Mon 19-Dec-11 13:02:29

Morning all .. duggs love the mental image of you throwing your drink over them both! You're absolutely right of course, unless someone's been through (or going through) what you are, they just don't understand.

/waves to everyone, trying to catch up on everything that's been said over the weekend. My we're a chatty lot! smile

freelancegirl Mon 19-Dec-11 13:13:05

Yay Digi, I was going to mention doing a new thread but just been lurking on the motorway (passenger of course) and couldn't get around to posting.

You know, I started this 'Pred Thread' a few months ago, wondering whether there would be anyone to join me and tenatively taking a chance there might be other people out there. And here we all are, over 3000 posts later and gathering new folk all the time. It's such a great support for us all.

I think as thread number one is still loitering around I might get mn to take down the any link that goes to TV stuff etc, just so I am not always track-downable iykwim.

Right, looking back through the end of the last thread. Kittens it sounds like such a bittersweet time for you, I do hope everyone continues to be positive. Is there any news about her condition - do you think she will be able to come out of hospital at some point? Yes I am in Brighton again from the 27th for a good week so do let me know if I can help out granny or auntie in anyway.

I too was also thinking about PQ and how this Christmas will be hard for you. Am just down the road here too if you need anything! Funny that we share the same chemist - he must be wondering what the hell we are up to smile

Digi sorry about the situation with your mum! Do you reckon either of you will break before Christmas and contact each other? I am sure you will sort it out. Plus childcare is important to bear in mind when you're going to have two! Not knowing much about anything except the early part of pregnancy (on which I am now a flippin' expert) when do you enter the third trimester? And also when will you be leaving work and for how long? And what will you do about going back? Am intrigued.

Cheerful am shocked too at your awful experience with that doctor! I would second digi and say you really don't want to be seeing him again. Somehow implying it was your fault? WTF! I am feeling exactly like you at the moment. Last week I definitely had a lot more nausea. This week am just tired with the occasional boob twinge. And yes of course that makes me feel there is something going wrong. You hear of so many people losing them at this 8-9 week stage. *Coley I am tired a lot of the time but then I don't have a successful pregnancy to refer to so I don't really know how it should feel to be pregnant. Re the 12 week scan I have an appointment at my GP for Weds so I guess she will start the ball rolling with the hospital. Next scans are with Mr S on the 23rd which would be 9.4 and then if it's still alive then, the 4th Jan with St Mary's which would be 11.1 by LMP. So by that next week I would be needing to have an appointment for a nuchal if I am to go down that route. Again, it seems so near yet so far, particularly as I don't feel bad today at all. I've even been googling no nausea at 8 weeks.

Oh one symptom I have spotted today is a tremor in my left hand! Just when holding a fork or similar. Great.... Haven't yet Dr Googled it but am wondering if it is relating to Pred.

Thanks for all the info everyone about the fertility side of things for my friend. I will pass it all on. Euro I did tell her about you as yes you have had a similar experience except lower down the road in terms of not having tried IVF or anything. Duggs thanks for the PM too. I will pass it all on. Coconut I think, like with Euro and also my friend until her recent loss, I think the theory is that NKC can have an effect on actually getting pregnant in the first place. So you never know, it might be worth your friend getting tested.

battery hope all is going well with the testing. Are they going to scan you yet? I know it is still very early days but at least they could see a sac and check it is all in the right place.

Hello to everyone else, hope it's a good week for you all xx

freelancegirl Mon 19-Dec-11 13:13:21

Oh, sorry about the bold smile

freelancegirl Mon 19-Dec-11 13:15:17

Crossed posts with Ari and Duggs - hello! Tick tock indeed Duggs. Hurry up January. It's such a flippin non-Christmassy limbo most of us are living in!

eurochick Mon 19-Dec-11 13:23:04

free the Dr Beer book talks about implantation failure as well as miscarriage - it's the same process but happening at an earlier stage. I think it is particularly a problem for the category 5 issues he lists, but it has been a long time since I have looked at it so I might be misremembering. I do recall that the section on Raynaud's (which I read particularly closely as it affects me) mentions implantation failure and is in category 5.

freelancegirl Mon 19-Dec-11 13:25:08

Ahh, I didn't know you have Raynaud's Euro. Yes it is all connected. Mine is thyroid.

freelancegirl Mon 19-Dec-11 13:26:37

Oh and yes, for future reference, Dr Google says yes to hand tremors as a Pred side effect. Am I the only one on 40mg at the mo?

Arianrhod Mon 19-Dec-11 13:51:49

free I got exactly the same on 40mg pred, hand shakes (left hand only, oddly) like you wouldn't believe. It's gone now I'm off the pred, so it must have been that.

batteryhen Mon 19-Dec-11 14:38:12

oooohhhh nice new thread smile

Just quickly - HCG levels today 543 which means they have more than doubled again smile EPAU called me and are happy with that. So I am being scanned on the 29th. Gulp.

freelancegirl Mon 19-Dec-11 14:53:50

Yay Battery that's brilliant!! Will have to add your 29th date to the list. Scan dates seem even more poignant at this time of year don't they. Mind you, every date, possible due date, milestone date can be tied to something I think. But a scan between Christmas and New Year is always going to be scary. Sigh. Same with me on the23rd. All we can do is just keep calm and carry on, as the Post Office might say.

Arianrhod Mon 19-Dec-11 14:56:50

Woohoo battery, that's great news! Nice levels, going firmly in the right direction!!

ChoccyPud Mon 19-Dec-11 15:48:14

We are rather chatty aren't we?!

Yay battery. Fantastic news!! So good to hear good news.

Interesting there's something about implantation failure as a separate issue to mc. Might have to get Dr Beer's book and read up while I'm taking a break. I do wonder if that's what happens with me as I usually lose them so early. But then again it's only been one on the so I can't really count the others... Sigh.

Scooter hope you're having a better day today.

Duggs what a picture! So sorry about how your friends were. I just think people don't get it and that goes for friends, family and oh's too. DH says reading our thread has helped him immensely to understand what's going on in my head. He won't ever totally get it. He's pretty damn good but he hasn't got our fixtures and fittings and can't know what we mean by cramps/twinges or feel the emotions as we do. Maybe we should make it required reading for the oh's and friends and family? Or write a book?!

duggs1976 Mon 19-Dec-11 16:01:16

Perhaps in a couple of years when we are all on another thread for "coping with no sleep", multiple births and "moody toddlers" we could find a producer ( look at freelance- and make a Blockbuster movie about our journey. It will be so successful and help so may other women and men and we will become millionaires and live the stress free lives that we dream of but don't exist!!!

Or yes maybe we just convert into a book an self publish with our alias names wink

eurochick Mon 19-Dec-11 17:51:39

That's great news, battery.

I was looking at the spreadsheet and noticed that my NK cell levels were not on there so I have added them in to column H.

Duggs that would be great, wouldn't it. Occasionally it is good to think about coming out of the other side of all this.

Coconutfeet Mon 19-Dec-11 19:54:01

Thanks for lovely new thread.

Just popping in as I'm busy stirring a risotto, but great news Battery! You must feel so relieved. It was obviously just a slow burner.

Free - Funnily enough, my friend told me today that her consultant is testing her for a range of things that I was tested for (blood clotting etc) but won't do NKC testing. I did lend her the Dr Beers book a while back but I think she found it a bit overwhelming. I can't help feeling that the NKC could be the key, but of course it's not my business to tell her. She's not a really close friend. It's just frustrating thinking of them spending all that money on IUI, when there could be something stopping it from working. She's gay, so it's not like they can just try naturally for a while and see what happens. Each month is a real logistical headache for them.

Duggs - Sorry to hear your friends were so unsupportive. It really is a case of not knowing how it feels till it happens to you, I think. Thank god for Mumsnet!

Cheerful - I agree with Free and Digi that it might be better to see a slightly less experienced but more sympathetic sonographer. The doctor sounds disgraceful.

Got to go - risotto ready. x

AandRMum Mon 19-Dec-11 20:30:22

Hi All - thanks for the lovely welcome and useful info. Am very pleased battery re your hcg levels - 29th will be here eventually - the first 12 weeks are just like time was as a child - endless!!! digi I am not sure I twigged you are having twins - how fab!

cheerful I had a similar experience - my doctor at EPAU was cold and personality deficient who could only write on every slip about me being anxious hence in need of some test or another with a clear indication that she wouldn't bother otherwise - 4mcs in and I think some anxiety is allowed!! I will not go back there - am thinking of a home birth if when I get that far.

I am not sure if I will do much more than lurk at the moment - I am out of practice and am in a happy bubble of denial. It is hard to hear you all in the throes of it as it is such a familiar feeling and I know I will be right there with you all once we kick off. We start building our house in the New Year (I strongly link the two year delay on this with pg probs!!! More to do with a very strange concept that the next sprog wants to be born in the new house than to do with the stress involved although I am sure that didn't help!!) I am putting much store on the builder nervously asking my DH whether I was pg as every job they had been on the wife had been pregnant - sounds like a good track record to me!

Big waves! Sorry am a lazy git at name checking ...

suemays Mon 19-Dec-11 21:31:28

battery fantastic news on the HCG results! Sounds like you are on track now!

Scooter sorry to hear your birthday was awful and that you felt so miserable. You have every right to feel like that after everything you have been through. At least we all understand how you feel! I PMd you earlier as I am free to meet up before my appt on Wed if you still fancy it?

freelancegirl Tue 20-Dec-11 09:06:48

Hello, just seeing if I have managed to bring a new poster, Picolina, over from the previous thread. I wanted to say don't worry too much about the Pred side effects. They are not really too bad. You have started quite early though at CD7, did Mr S tell you to do that? Only that if you are on it by CD7 and need to come off it 14 days after you might not necessarily know if you are pregnant at that stage. Although I guess 26 days is a reasonably short cycle but 14 days on Pred still only takes you to CD21.

Side effects wise I have taken Pred twice now, first time was 25mg for two weeks followed by 40mg for 5 weeks (then an ERPC after no foetus had been seen, so possible blighted ovum rather than the treatment not working) and this time I have been on 25mg for two weeks and now 40mg for 5 weeks again. I definitely got a bit of a puffy moon face both times but that was when on the higher dose. This time I have some awful dark circles under my eyes and I have started getting a slight hand tremor. If you are not going up to the higher dose I wouldn't worry too much though - yes there can be energy swings and sleep problems but we are on it for such a comparatively short period of time overall (that's if we get pregnant and stay pregnant!) that these are liveable with. I have not had to come off it after only two weeks, but when I came off the higher does after the ERPC I did have some limb aches and weird muscle vibrations. Again they all go pretty quickly.

What do the others say?

AandR a happy bubble of denial sounds wonderful right now! Can I have some of what you have got please...?

Yesterday I had a bit of a miserable day for some reason. DH is getting really stressed at the moment with lots of work and all the pregnancy stuff of course and the fact that he hasn't had a holiday for so long. He is really run down. I am not unwell of course (NKC still seem to be keeping any illnesses at bay!) but do feel exhausted a lot of the time. In the evening I feel like I have been injected with some sort of paralysing snake venom - I just sit in a catatonic-like state on the couch. I have started to feel less nauseous though which of course is worrying me. Oh well, only another 3 days until my next 'dead or alive' scan date. Tick tock.

eurochick Tue 20-Dec-11 09:49:25

Morning Pred Thread ladies! And welcome Picolina. I cannot help on side effects as I will start taking my first lot of Pred in a few days (probably on Xmas Day or thereabouts in fact).

In fact, I have a question myself. How are all of you detecting ov so you know when to start taking the pred? I temp and the temping software confirms ov after three raised temps, so that is 3 days after ov. However, I can feel ov and my estimate is always within a day of what the temping software thinks. So I guess I should go with my instinct? What do you all do?

free I'll have everything crossed for your next scan. Hopefully the time will whizz by with Xmas in the middle.

cheerful I am really not sure why some people go into the "caring professions" when they seem unsuited to them. I'm sorry you had such a rubbish experience.

freelancegirl Tue 20-Dec-11 09:57:48

The first time I fell pregnant on Pred I was temping with the help of Fertility Friend Euro, something I found useful to help me pinpoint feelings of ovulation as I had never actually 'tried' to get pregnant before. The second time (this time) I didn't bother with temping as I just knew I was going to ovulate around CD14 or 15. So started SWI around CD8 just to be sure and didn't stop until CD18! I just thought 'that should do it'. And indeed it did. I did have a few ovulation sticks in the house but they never really showed me a proper line both times so I just ignored them. I am glad I did as I would never had got pregnant had I waited for them to tell me anything!

Cheerfulcharlie Tue 20-Dec-11 10:11:41

I am so so pleased to hear about your HCG Battery. They are ramping up good and proper now!

free, my god you make me laugh. Not sure I should laugh really, but the 'dead or alive' scan... it's great to put some sort of humour (however dark) to this. The 'fertile but deadly' thing always makes me smile too. Hope this isn't being highly inappropriate to find this humourous. Apologies if I am hugely offending.

PQ77 Tue 20-Dec-11 12:10:14

Just saying hello to the new thread.

I was in a decidedly unfestive mood last night and turned out the lights so I didn't have to deal with the neighbourhood carol singers singing outside my house (it was just like in the movies!) and small children knocking on my door collecting for charity - do I win the Scrooge/Christmas is cancelled competition? I have also been affected by free's evening paralysing snake venom...and I'm not even pregnant.

duggs can you come and throw drinks at some people for me?

euro I usually use the digital Clear Blue predictors which give you a smiley face - no messing about, it either smiles or it doesn't. CB are expensive though so you'd want to pick them up on boots 3 for 2.

cheerful I am all for gallows humour - fertile but deadly, dead or alive scan - bring it on! I find that when I am flippant with friends it freaks them out but I think it is well received here. Otherwise we would spend all our time crying.

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