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Conception

When's the best time to get pregnant? Use our interactive ovulation calculator to work out when you're most fertile and most likely to conceive.

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Original poster

TTC or pregnancy on prednisolone or similar part 10

999 replies

roseandroli · 14/02/2013 10:17

We are now on part 10 of this thread! 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 9: www.mumsnet.com/Talk/conception/a1552980-TTC-or-pregnancy-on-prednisolone-or-similar-part-9

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

OP posts:

Stogan · 08/08/2013 21:09

Oh mollie I'm so sorry. Will say No more as quite honestly do not know what to say I'm so sorry Hun xxx

suemays · 08/08/2013 23:15

Mollie I am shocked this has happened after your 20 week scan. I know it won't give you much comfort but if you want to PM me as I lost Scarlet at 22 weeks I would be more than happy to chat/cry with you. It was in different circumstances for me but the awful and lonely outcome is still the same. Please don't blame yourself for any of this, I know I did in the early stages.

I am hoping that my little baby Scarlet and your Oscar are playing with your little boy wherever they all might be. It gives me some comfort to think that and I hope eventually it will with you. Stay strong honey, we are all thinking of you xxx

suemays · 08/08/2013 23:20

I forgot to say that this tragedy might not be related to the immune treatment you were on as mine wasn't. We were told it was just bad luck - seems like some of us attract it in bucket loads.

TheAccidentalExhibitionist · 09/08/2013 07:54

Mollieboo I am so so sorry to hear your news. When do you go back into hospital?

This is the most dreadful ordeal for you and your DP. Please let us know if we can do anything at all.

I'm holding your hand.

teamdozie · 09/08/2013 07:55

Mollie

I am so sorry to hear your sad news..

Just like Suemays said dont blame yourself.. I dont know what else to say...

I ve been through the same you'd think i would have something nice/reassuring to say.. Im so sorry

Dont lose faith..

Arianrhod · 09/08/2013 13:43

Oh lord mollie I'm so, so very sorry to hear your terrible news :( I don't post on here much these days but I still log in now and again to catch up with everyone's news, and I was really rooting for you.

Such a sad thing to happen, I do hope they can find out why so you can at least know what happened.

I know nothing any of us can say will take away the pain, but do know that we're all thinking of you and wishing you the best.

Take care of yourself, big hugs.

Abney · 09/08/2013 14:02

Mollie I am shocked and saddened by your news. Like a few others have said I hope they can advise you why it went wrong so that you can hopefully have the strength to carry on. I know this will not help at this particular moment in time but my ex colleague had 3 late miscarriages but she has still managed to have 3 children. I think her issues were to do with the placenta. I am sure you are aware that everyone on here was routing for you and we will all still be routing for you once you have had a chance to recover. Thinking about you and your OH at this very sad time. I really hope the hospital will get to the bottom of it.

ChoccyPud · 10/08/2013 08:04

Mollie I am so so sorry to hear your news. I shocked and don't know what to say other than I hope you at least get some answers soon as to why this has happened. I'm devastated for you, it's so bloody unfair. Take care of yourself. We're here if you need anything.

I feel awkward following that with this of all things... my scan yesterday showed all ok for this stage, though we all know better than to think that's any guarantee.

Clabbage · 10/08/2013 08:15

Oh Mollie. No no no. I am so shocked and saddened to read this. The injustice of this. Your pain. I am so so sorry. Ridiculous inadequate words with an enormous well of care love and support beneath them. I am sure there is little I can do but please know that the intent and will is there should there ever be anything. I feel so angry that after facing losing O, you now have to face this. Be kind to yourself and know that we are with you xx

duggs1976 · 10/08/2013 09:48

Thinking of you this morning mollie. How the world keeps on turning as your world is smashed into pieces and you wonder how on earth you will make it through the day? I can't imagine. As sue says the strength ladies like us have to find to endure the standard pitfalls in life is surprising when we've had to jump so many hurdles just to get to a place even a low risk pregnancy struggles with. Like everyone has said when you are ready you know like sue, you can get there. This is just a cruel twist of some kind of fate. Doesn't make sense.

Freelance - a quick question about your documentary a few of us were discussing - is it going to be about mc in general or specifically NK cells? If it is mc in general I'm happy to participate. If NK cells only then not really appropriate for me as wasn't my answer and in fact lead me up wrong path for couple of years so just wanted to check first?

duggs1976 · 10/08/2013 09:56

But have had other issues that are relatively under the radar so happy to raise awareness of those if appropriate! ?

freelancegirl · 10/08/2013 11:02

It's about mc with a focus on recurrent MC Duggs and I would dearly love to interview you. I'm doing both nkc advocates (Mr s) and also those who think it's a placebo effect - interviewed lesley Regan this week. Will pm you later when get home.

So glad to hear your positive scan news Choccy xx

Stogan · 10/08/2013 11:06

Big hugs for good scan news to Choccy everything crossed for you Hun x

duggs1976 · 10/08/2013 11:33

Oh that's good news. I certainly don't think is a placebo but I am very interested in anyone who is looking into why the cells are raised. Sometimes it is just a hidden infection and once cleared they drop as seemed to be with me. It's fantastic that you are doing this so any help I will be there.

sameoldIggi · 10/08/2013 13:50

How strange if it was a placebo affect. So, if I'd just believed my other pgs had a chance of working, they might have? And why would I feel more confident in the steroids after having had a mc on them?
The fact (am I right about this?) that women having ivf are routinely given steroids suggest they have a part to play in successful pgs. It is odd, are the anti-blood-clotting medicines also placebos?
Mollie thinking about you every day and hoping you somehow find the strength to come through this injustice. So, so sorry.

Abney · 10/08/2013 14:56

Free I am happy to assist if it stops one more needless mc. In my case I had 1 unexplained mc when I was 26. Started again at 36. 1 molar (apparently rare) followed by 1 Edwards (again apparently rare) followed by 4 straight mc's. None of them got over 9 weeks. I then thankfully had my first DS. At this point there was no issue with NKC's. I then had another 4 straight mc's, again none reached the 9 week mark. After mc 2 I was diagnosed with vhkc but it was too late as I was already pg with mc 3. The 4th mc followed despite being on a high dose of pred. Thankfully DS2 followed. I was on everything ie pred, intralipids and Hydroxy. In regards to my last successful pg Dr S said there was signs of a twin that did not make it. If it was not for baby Lewis then this would have been another mc on the full treatment programme. So my question is and my gut instinct is that could this just be down to the quality of eggs. Isn't it also weird that I had mc's 10 years apart with different partners. If women knew that it was just a case of catching that good egg would it make it any easier. What I believe Dr S should do is throw the book at it on a 'patients/clients' first visit. Dr S should not drip feed the drugs like you were a guinea pig otherwise you don't know if the drugs worked or not. Another interesting point to note is that both DS's were born when new treatment was added. DS1 was first time on pred and DS2 was first time on intralipids and hydroxy. Is this just a coincidence? Sorry to rant it's just my thoughts.

freelancegirl · 10/08/2013 21:13

I wish I'd had you lot sitting there with me as I asked her questions as my brain is still taking a while to engage. That's a really good point about the IVF iggi and steroids.

Shit - I have so much to do! I'm getting some really nice comments and a good few backers from facebook on the trailer. I will PM it to you all. But I guess I am permanently 'outed' with this nickname anyway now!

sameoldIggi · 10/08/2013 21:18

The trailer looks great Free. I'm so pleased it's going to be out there. There's very little understanding in the general public of the causes and consequences of mc (tv soaps etc dont help). And it is such a lonely time for anyone going through their first.

TheAccidentalExhibitionist · 11/08/2013 08:43

I had a little weep when I watched it freelancegirl it's a lovely trailer. Knowing you are not alone is so powerful.

freelancegirl · 11/08/2013 08:50

Ahh, thank you. I want to gather all your knowledge when I'm editing it and make sure I include all these great points you keep making.

Delta just mentioned one by PM too - that at Mary's seem to focus more on clotting issues and if it don't have those then what next? I wish I had asked LR as they couldn't offer me any treatment as I had no clotting issues found.

I need to create a master list of such points.

I'm so bloody busy - what with childcare and the documentary and circulating it to try to drum up backers as also the every day work writing. But I also was working my way through Pm ing all of you here with the link to the documentary trailer on kickstarter. Maybe I should just post the link and have done with it.

I just wanted to add, as I'm sure we are all thinking the same, that still thinking of Mollie all the time and hoping the next step is out of the way speedily. I hope others that have been there before, like Sue said, are helpful. So sorry you're going through this.

freelancegirl · 11/08/2013 10:14

Here we go everyone! The link to the recurrent miscarriage documentary. We need as much backing as we can get and pledges can be as low (or as high!) as you like. Hope it doesn't upset anyone too much. It's very nerve-wracking putting myself out there on such a personal project but I feel we would all be so much better off if miscarriage was more widely talked about and potential causes and also treatments available more widely known.

Here we go, it's called First Heartbeat:

www.kickstarter.com/projects/434068999/first-heartbeat-a-film-about-miscarriage

Any contacts you can think of in broadcasting, press and of course anyone that has been affected by the subject do please pass on to them.

sameoldIggi · 11/08/2013 13:33

Does anyone know did the code of practice regarding miscarriage that we (mumsnet) were asked for feedback on, ever come to pass? I remember it suggested expectant management as the norm, waiting times between scans etc.
I was just thinking watching Free's trailor of the ways in which the system makes things even harder for us. Never mind refusing to prescribe steroids, there's the fight to get tests carried out when you're having an erpc (that made a horrible day even more stressful, thanks), and the promises of early scans "next time" that are then denied when you do become pregnant again. These things could be changed.

freelancegirl · 11/08/2013 13:36

I'm waiting to hear back from MN to interview them on this Iggi.

They said they were up for it ages ago but have ignored my last email re fixing a date. Will chase today!

BellyD · 11/08/2013 20:14

Hi all, I am mainly on the other thread these days but lurk on here from time to time. Mollie I just wanted to say I am so very sorry to hear your sad news. It is totally unfair and must be absolutely devastating for you and your OH. Thinking of you and praying that you are able to get some answers as to why this has happened.

Free your trailer sent shivers down my spine. It is such an important message to get out there and you are so brave to use your journey to highlight the issue. I will pm you about a friend of mine who might be suitable to approach about the film.

Mel3062 · 12/08/2013 08:23

Sorry for some reason was knocked off the thread. I'm happy to participate too. Mollie I'm truely devastated to see your news xxx words fail me

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