TTC/Pregnancy on Prednisolone or similar part 5

[suemays]

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 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

Euro (shamelessly only dealing with last question ask as have no memory) I wasn't prescribed the om first time round, only when I was back again and said I'd had lots of digestive pain when taking pred.

Scooter I hope your DS is OK now - what a awful thing to happen on holiday.

Buster I had those tests done before Xmas and it is Estradiol, it's common to have them done.

Battery you are bound to feel worried seeing as you got to 12 weeks before but at least you are on a treatment programme now that has worked for others. I would be exactly the same as you!

Ari I asked Dr S about evening primrose oil etc and he told me not to bother! Who knows what to do in our situations as we have so many sources of info! Maybe you should take RJ and EPO up to ovulation and then stop for 2 weeks? That might help with regulating your periods and wouldnt work against the NKC?

free it cracks me up (pardon the pun) that we all know so much about each others digestion problems! I know what you mean about the 'pooing' out the baby as I always dread going for a 'number 2' when preggers.

Hi to Willitbe sorry to hear you are back on here again. I am on the V High killer cells treatment too so the same as the others on here but I also take 150mg aspirin from BFP as I have a raised TEG (diagnosed at St Marys).

Snoopy did you get to the bottom of the 'waiting a cycle to TTC after the chemical' question with NLC?

Kittens glad you have a plan now, looks like most of us will be on the Superov plan at this rate! I am guessing then that it makes a difference if your womb lining is still thick enough to carry a baby regardless of any scarring? I also wonder why its different for IVF. Would be interesting to know the optimal thickness they look for.

I am now counting down the days until I test. Have been having pulling sensations in my lower tummy but it could be my AF on its way! Also been feeling other slight pregnancy symptoms but I know the preds can do that too as I experienced it when I first went on them and was sure I had conceived! Only time will tell.

I really wish I could join you for the meet up but cant due to acupuncture at lunchtime - do any of the out of townies (Duggs, Comedy, Snoopy Scooter and anyone else who cant make the London one) fancy another meetup somewhere? I am happy to drive to a diff location than before? London is a bit of a pain for me as it takes a good hour and a half to get in.

Morning all
sorry not checked in for a few days I have been feeling ROTTEN !!! Come back Pred all is forgiven !!

am literaly sick from I wake up until about 10.30am then tired until about 4pm then starving and then as soon as I eat sick again, does this mean I am having an evil baby???

Feel like a bit of a fraud being on here now as am so far on but without Mr S, the cocktail of drugs and of course each and everyone of you ladies holding my hand tightly I would never ever have got this far so i hope you dont mind me hanging around until my naughty child arrives. Plus I thought maybe the likes of digi and myself being around would continue to give others hope as i know i really love it when previous thread members pop in and tell us that they now have happy and healthy children.

Anyway have missed loads with not being on so gonnahave a good cach up over the weekend to se how everyone is doing. In the meantime goodluck with all scans/testing/SWI etc, welcome all newbies and I hope evryone enjoys the lunch tomorrow (really wish i didnt live a million miles away from London woul love to meet everyone ) x

A quick update from Epsom from me. Another good scan, staying now for last intralipids. Measuring 14+3, spot on again. Theoretically this is my last appointment here at NLC! Well, it IS my last appointment. Next time will be at Epsom hospital. Mr Shehata - miracle man.

YEY free fantastic News. x

Absolutely briliant news free, so so pleased everything is well with your baby!! Now relax, as we all bow down in homage to the greatness that is Mr Shehata ..

stogan you stay on here as long as you want to! You definitely give the rest of us trailing in your wake the hope that it can work for us too!

Nothing to report from here, just /waves and good morning to you all.

Thanks ari x

free brilliant news another milestone!

stogan you are not a fruad we all want to hear from the ladies who are further along, like you say gives us hope. i for one can't wait for the birth of your devil child!!. I want photos! and all the gory details!! On the evil baby front I'm on floor with sickness from 5 weeks and it continues all way through (without pred anyway). I was also guzzling bottles of gaviscon. Anyway DS turned out to be a ..cheeky gorgeous...little devil! heartburn thing was true with me too as he had loads of hair. where do you live?

scooter your poor ds hope he is recovering well. And you? damn you needed a good relaxing break what a shame.

To add to the Omeprazole -er I didn't bother with it either. When briefly pregnant on 40mg last week I had slight tummy upset but I left them with my Mum in US! so couldn't take any anyway.

Anyway sue talking about ignoring advice I think am going to ttc this month. Ok I know I am taking a risk and Louise advised against it because of slight increase in m/c but I figure it's just another month wasted and if it causes that then on my head be it. It's my body at the end of the day and it's not like I am doing the Sup Ov thing as understand the timings are critical and cycle may be slightly askew this month. The other reason I want to try is you are meant to be super fertile after a m/c and there is always a chance it may actually stay there.... I don't know just feel I want to.

London is too far for me too - but yes I am up for a meet up with you ladies who are a bit further north.

comedy lovely to hear from you, How are things?

kittens glad you are a bit clearer with where things are going.

Go Ari Go sue Go Ari Go Sue... FC x

I am all the way up in Carlisle snoopy I do love it here but long way to London

My heartburn has been bad too DH jokes that I am having a werewolf not a baby , yeah really funny !! x

lol Thanks snoopy ... I've been feeling sharp stabbing pains and some dull aches from the left ovary sort of area, last night and this morning, and I'm trying very hard to ignore them and not tell myself they could be implantation pains. The war in my head is unbelievable .. "that's implantation" ... "NO! it isn't, it's wind. Or something else. But definitely not implantation. Don't be silly.". 7dpo today, you see, and every other pg I've had pangs on 7dpo. But it's not, it's just coincidence.

Does anyone else have this mental arguing with themselves, or is it just me?!

And, well, snoopy at the end of the day it's your body, and your intuition. If you feel you should ttc this month, then you do it - you know your body better than anyone else. And if nothing happens this month (although I hope for you that it does, this is your lucky BFP month!), well then that's the month break Louise suggested, right, but you can feel that you did at least try.

Thanks all. Stogan don't even think of leaving! The later folk are a huge part of this. We want them all still hanging around when breastfeeding/taking the kids to school/arranging the kids' weddings! It's support, advice, hand holding, random dr googling that we will all benefit from whatever stage of the process. Technically, according to the thread title I am now not on Pred either! But we do say 'and similar' so am hoping that still encompases everyone too.

Talking of help, advice and support etc when I come back from holiday I need to start getting serious again with this filming. It's a programme I really think needs making and if I can get support of a production company or broadcaster that would be amazing. If not however i still think the film needs making and i have to do it and just put it online I will do so. I
I know how interesting and supportive I would have found it myself to watch something like this when times have been very hard. I have my own video diaries - some if them at really dark moments like when I have had another ERPC but I really need other case studies too. U know when e had our meet up some of you said you might be up for it. I realise that putting yourself out there can be scary, after all the weird silence that surrounds miscarriage us one major reason I am doing this, but if you could all privately have a think about if you will join me as a case study that would be fab. I need people from all walks of miscarriage/ pregnancy as it were. We need to explore this strange cloak of silence and help other people who might be in our situation. No need to reply here but when I get back from holiday please bear in mind that I might be asking which of you wouldn't mind helping. I bare my soul on this myself too, so rest assured it will all be done sensitively.

It's taken me ages to write this - what with a drip in one arm and people popping in to check blood pressure etc so bound to have crossed posts with someone!

free I certainly wouldn't mind being involved, I'm not worried about people knowing what I've been through (am still going through) and if it helps others, much more the better. I've gone from being utterly naiive about the whole process (I blithely assumed at the start of my first pg Oct 2010 that since I had already had one child, then I wouldn't have any problems with the next), to painfully aware of everything that can go wrong, and I would love it if I could help someone else along the way either avoid some of the heartache we here have all experienced, or else give someone already going through it some hope and information of how to take some kind of charge of the situation. IYSWIM.

I have a friend on BC who had a MC the same-ish time I had my first one, and I caught up with her again about a month ago. She had problems conceiving after that first MC, and was eventually diagnosed with PCOS. Anyway, I gradually lost touch with all those who I had been chatting with a lot around my first and second MCs, as most of those ladies went on to have successful pregnancies and left, and I also stopped reading the TAM board pretty much as there were none of the original ladies still on there. But I caught up with my friend, and found she'd just experienced her second MC a couple of weeks before Christmas, at 17 weeks. She didn't know anything about private MC testing, what the NHS test for (and don't), what other tests are available to her, other treatments to possibly help her PCOS, etc, so I was glad to be able to give her information that the medical people around her hadn't. As it turned out, and if she's reading this I hope she doesn't mind my sharing this with you all, she had a CVS test and the hospital believe it was this that most likely caused the miscarriage since her baby appeared to be perfect - the 1 in 100 chance that they always quote to you. How unbelievably terrible, and it's made me think very long and hard about having this test should I ever get to that stage again.

Sorry for the ramble; my point was simply that it was so good to be able to share some of the things I've discovered along my journey with someone experiencing similar pain and heartache who was unaware of what is available that might help. So yes, I'm absolutely up for sharing my experiences, if they're of any use.

ari I can't tell you how many times I have Googled "cramping 7dpo/8dpo/8dpo etc....." Even when I had read all the searches the month before, and the month before that. Lol. But sharp stabby pains sound promising. Are they "poker up the bum" type pains or like someone or something is in your womb with a mini pickaxe? The former can often be caused by trapped wind or constipation but the latter is generally how my implantation pains have felt.

Yes, in answer to all of your questions, I am feeling a fair bit calmer since my conversation with Louise.

With regards to the 3rd trimester people, please do stay. If you have time after your babies are born do pop in and let us know how you are getting on. On the other thread I'm on there have been lots of babies born since the thread was started and everyone pops in, albeit only occasionally as they have their hands full with looking after the little ones. The thread moves a lot slower than this one, at a rate of about one a year. Last year's thread is nearly full and I have suggested they start the new thread with a list of all the thread babies in the OP as an inspiration to the newcomers. I hope we can eventually do this here too.

Stogan you can't leave! You are one of our trailblazers and a reminder that it can work.

free that is fantastic news.

About the documentary, I do wish someone would lift the veil on mc and fertility issues. It still seems to be such a taboo not to be of "good breeding stock" which in this day and age is ridiculous! I think people going through mc or fertility issues would find it easier if it could be talked about more openly with no taboo attached. It might also help people who breeze into having children, getting lucky really quickly, to have some understanding of what we go through. I doubt that one documentary could stop the "just adopt" type comments (always from people who can pop out a sprog whenever the mood takes them, of course) whenever there is an article on infertility in the media, but it would be a start!

"Just adopt" comments . I have had that, do they have any idea how many yrs, how stressful and possibly heartbreaking it can be!!
My friend adopted sucessfully in the end and it was all of the above and yet poeple think yeah just pop down the shop like buying a loaf of bread or something!
In fact it caused massive tension and nearly alienated her from her parents due to all the gruelling interviews. and all the tv progs on adoption week make it sound so easy and unbiased to the type of family/age etc you have. Sorry that's rubbish. Well from my experience anyway. Rant over.

kittens oh they are definitely of the "small men inside me with ice picks" type (and if I get hold of them, they're in for it!). But I'm fairly sure I've had similar pangs on months that I wasn't pg, around the same time, so perhaps there's just something that goes on in my body around that time regardless. I refuse to think too much about it, that way lies madness!

euro Agree with everything you say - plus, as one who did "breeze" into having my first - she was a complete accident, one-off time with ex (never, but never get persuaded to go on holiday with an ex), at age 38 I believed all the statistics that say women over 35 find it harder to get pregnant and didn't think anything would come of it - it would be a godsend to stop the bewilderment that follows having an 'easy' pregnancy happen then losing pregnancy after pregnancy when you try again. And the fact that pregnancy in itself can trigger all kinds of problems that can then lie in wait for you should you try to get pregnant a second time. I'm not saying necessarily that it would have been a good idea to know all of this before I started trying for my second - no reason to scare the wits out of someone when it might not be necessary - but it would have been good to have known of the possibilities for failure, so that it wouldn't have hit me quite so hard.

Ari I am really pleased youre up for it, what you and euro just said is perfect. We do need to lift the veil! And I also I want to explore WHY there is this veil. I was really reluctant to put myself out there too, when it came to helping mn with the campaign. I dont know why - embarassment, stiff upper lip? Either way I knew I had to swallow it for the next generation of miscarryers. Your friend being a perfect example.

pebbles too. I've just been texting her as age she just found out (am sure she wont mind me telling you this) that the baby was normal and so it must definitely have been the nk cells. She also found out it wotld have been a boy. Makes it so much more real and upsetting sll over again when you find out the sex i think. Now why in all her years of TTC and ivf has no one thought to do this simple test?! Makes me do angry. Thank god we have all found this treatment. Yes miscarriages might still happen but a simple and inexpensive drug can put us on a level playing field. Think how many people there are out there who haven't cone across this information and never will.

Oh and Ari, little men drilling in your nether regions is definitely a good sign :)

Thanks for ur support ladies !

free I am mega soooo up for helping with a documentary. Up north here I am like a fascinating creature !! No one has heard of miscarriage let alone killer cells it's like I'm an alien !( I'm positive miscarriages do happen up here it is such a taboo subject) when people ask me if I have kids and i say no but been pregnant before 4 times they almost run away, it's like I've just spat in their faces some of the looks I get. And as for the consultants and midwives they think I'm some peep show they can come and gawp at ( well that's a bit harsh as they tend not to anymore lol !!) just a bit of insight from my world, kinda makes me feel special in a weird way but my god if only we could get the word out there and help women like us, I'm onboard 110% x

I have to say free, knowing what sex the baby would have been would actually have made things worse for me. I still worry that my third MC in July was a 'perfect' baby that my body killed off, and the worry that that was my last chance at a good baby (I know, possibly an unreasonable fear, but it's still there). I never heard anything back from the hospital/lab even though the consultant that did the ERPC sent the foetus off for testing (it was 1 day short of 9 weeks) - I did expect at least a letter back saying the lab refused to test it. I never heard anything at all, but I know if they'd told me the sex it would somehow have made things much, much worse for me. I feel badly enough that my body killed it off - give it a definite link to a "real baby" and I would feel worse.

I reiterate what I said previously - why oh why don't they test ALL women going for IVF for killer cells? A £250-odd test, weighed up against the thousands that will then be spent on IVF. Imagine doing IVF cycle after cycle, your body silently killing off each embryo - all that pain and heartache that could potentially be avoided by one simple test right at the start. It beggers belief why they don't build this test into the whole process by default.

Free congratulations on the positive scan! I go along with what most have said already. I think the general population need educating. We are very fortunate to have done the research and discovered NK cells are the reasons behind the miscarriages but so many people just continue with no help whatsoever from most of the medical profession, and possibly not the where with all to research it themselves - so I am right behind you! I think it clearly indicates there is no relation to age - another misconception highlighted to me by my GP - Ugh!

2nd / 3rd Trimesterers and 4th please do stay around as it has been inspirational for me to read all your stories and to see so many pregnancies progressing. Esp as I seem to be going through the mental anguish of has this baby died and constant knicker checking/symptom checking. Convinced all symptons have gone. Terrified of the scan next week as they all seem to die in this next week period i.e. week 6-7 as I have always miscarried at 8-8.5 weeks.

Snoopy I'd say crack on if you want to.

Free - great to hear things are still going along so well for you. I pm'd you previously when on the first thread, about being willing to take part in your documentary, that offer still stands. I certainly hope you get the right people to back you and get out the important message that miscarriage does not need to be a taboo subject.

TMI: I have just a few minutes ago finally passed the pregnancy sac, I was 9 weeks pregnant last week when I started to m/c, spent a night in hospital after dramatically arriving in a&e just as I had an enormous gush of blood, within seconds a trolley arrived and I was wisked away, the fastest I have ever been through the a&e waiting room!!!!

I am currently waiting for the appointment for finding out what the doc's are going to prescibe me, as I am not on a NKCell treatment, but ANA+ treatment, I am guessing I will be on only 5mg pred pre-ov, But I won't know until I get the appointment.

It is encouraging having so many of you all doing so well with the Dr S treatment plan.

willitbe. So sorry to hear what you're going through! My thoughts are with you at this awful time.

I also hope you manage to get an appointment quickly so you can hopefully have a treatment plan in place. Have you been tested for NK cells?

willitbe sorry your having a horrible time it's awful. I didn't start m'c till nearly 12 lweeks last time and it's was hideous. Hope you have someone to hug, if not ((hugs)) x

Merc hang on in there it's such a worry and ta for your support. x

God someone kick me up the backside -all I've done is watch Australian open all day - very exciting.

Sorry to hear of what you're going through willitbe, it's a horrible time. I'll add my virtual hugs to snoopy's.

Merc completely understand the mentalling ... hang in there, and lots of PMA for next week's scan!

snoopy well you're doing a bit better than me ... I'm supposed to be doing a major upgrade (IT), and I just can't be @rsed to do what has to be done. Awful, really, and just means I'll be twice as manic come Monday :)

willitbe I am very sorry to hear that. Have a virtual hug.

Can I have a moment of self-indulgent mentalling please? I usually use the digi opks but as I thought I was still miles off ov, I thought I would start by using up the three non-dgi ones I had stuffed in my office drawer from months ago. They are the Boots ones. Has anyone tried them?

Anyway, they are the kind where the line should be the same colour or darker than the control line to indicate a positive. My line is a shade paler but very close to as dark as the control line. Has anyone found that the lines do get properly dark with these? I know on some brands they never do. If we were just shagging I wouldn't be mentalling, but as I don't have my supposedly pre-ov scan until next Wednesday I am panicking because I am wondering if I should bring it forward? Having missed my monitoring scan last month because of Xmas I am desperate not to miss it this month and the weekend is approaching. ARGH. Annoyingly, were it not for last month's late ov, my scan would have been booked for today (CD13) this month.

I am going to run down to the pharmacy and get some of the digi ones to try in a couple of hours I think as they give a yes/no result. This is really annoying as I suspect trying to fit a scan in tomorrow might be tricky, sunday everything will be closed an monday might be too late. Oh tits!