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Conception

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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:
duggs1976 · 12/03/2013 09:11

Really free ? i dont suppose untreated nk cells if an issue often allow a pregnancy get that far? well I guess the only thing about later losses is the chance to try to discover the cause I suppose... Hmm I read somewhere online that the average 38 yr old will have on average 4 viable eggs per year. Leaves 8 duds. Made me feel slightly better. As kittens said I'm not sure if chromosonal issues fall into that group as is something to do with moment of conception and totally random. Unlikely to happen again. Look at kittens now imminent motherhood Grin such a success story!

BellyD · 12/03/2013 09:44

Cartoon so dreadfully sorry to hear your news. It is just so unfair. Thinking of you today and wishing you a speedy physical recovery. X

Arianrhod · 12/03/2013 10:12

cartoon Just echoing what the others have said really, I'm so very sorry you're having to go through this. Better as kittens said that you didn't have the agonising choice to terminate a baby that was clearly unable to live, but I know that's not really a great comfort to you. Sadly NK cells or no NK cells, sometimes these random chromosomal problems do happen. Big hugs for you, take care of yourself.

TheAccidentalExhibitionist · 12/03/2013 14:42

cartoon I don't really know what to say. I'm so sorry you're having to go through this, at this stage. It must just be dreadful for you.

Please know that you can come to any of us on this thread at any time and we will hold your hand and support you. We are uniquely placed to understand what you are going through.

I'm so, so sorry.

mollieboo · 12/03/2013 21:31

cartoon I'm so sad to hear your news, its so very unfair. I'm really sorry and sending lots of love and hugs your way xx

mollieboo · 12/03/2013 21:41

Hi duggs and free, just reading your posts. When pregnant with my son, Mr S thinks the problems I had were due to untreated high nk cells. I got to 29 weeks, the nk cells damaged the placenta but not enough to end the pregnancy in the first trimester.

freelancegirl · 12/03/2013 21:58

That's interesting mollie. Sorry to bring up such a tragic thing for you again but was that the reason passed away at 5 months - and because he was so early? But yes, when I interviewed mr s he has said that about late losses if the pregnancy has been untreated. But if treated he seems to think getting to 9-10 weeks is a good sign the nk cells have been combatted.

duggs1976 · 13/03/2013 07:04

Free when you interviewed him was it a while back or more recently?

Interestingly A few of us on the suoernovulation\ turning into an ivf thread have discovered differing info from dr s and wonder why he chooses to ignore infections and the Chicago/ dr beer protocol? The stats for recurrent miscarries show around 70% of women will eventually go on to have a baby ( they attribute to TLC but is obviously nature and the right combination etc.) according to st marys. dr s treatment programme claims 85% success so a marginally higher figure but not much.
I guess for people like myself, choccy especially, ari,belly d, breezy, who have either not conceived anymore or mc on his treatment plan and some over and over and then those of us who've moved on from him to try to identify if there are other issues and have found some it is difficult to believe in his entire approach. There is def some credibility in nk cells testing, but why so blinkered and channeled and why not open to the fact yhat those of us who aren't getting result after such a long long time then we may have other issues. The serum clinic in Athens, Sita west and dr Gorgy all look more towards cause of inflated nk cells and usually there is a hidden infection. These hidden infections caused abnormally high DNA fragmentation in my DH which back last summer gave a 1% chance of live birth. This is not a controversial area just new and US based. If only dr S had been a bit more open to these possibly related things I might still be religiously spending £300 with him each month on the super ovulation plan? With rubbish sperm. I did for 18 mths though and am a little disappointed I didn't see one of the other more open doctors sooner.
I do understand if a doctor gave me a pretty instant solution like he has done for so many of you I would think him a god, but the 15% it isn't happening for, I wish he would gracefully advise further exploration elsewhere or even better embrace these related areas himself. He will never get 100% as is against nature, but I cannot get out of my head the blanket approach he retains even when his plans aren't working.
I guess we will all see given time, and I hope those going onto have another child have equal successes but do keep us all posted as we need all the info we can gather as we are trooping on!

duggs1976 · 13/03/2013 07:08

Apologies for iPhone typing. Hideous.

mollieboo · 13/03/2013 09:18

Hi free, its ok, yes that's right. At 27 weeks doctors discovered that Oscar hadn't really grown past 20 weeks, and when he was born they could see that the placenta had blood clots in it which were preventing him from getting what he needed to grow. His only problem was that he was born so premature and so tiny. He is my little miracle to have got here and lived for 5 months, I feel so lucky that I had him for that time.

I was then advised to go onto Clexane in future pregnancies to stop blood clots forming but I continued to miscarry so I found Mr Shehata who thinks that the blood clots were due to high nk cells, so I'm hoping so much that the nk cells treatment works next time for me. duggs totally see your point re testing and treatment for other things. I never realised until finding this website how many other things there were to worry about. I've found a clinic near me which does dna fragmentation testing so that'll be our next stop if I mc on treatment again. So glad there is a wealth of information on here so we can all be well informed, but sorry that we all have to be in this position. Hope we all get our babies soon.

freelancegirl · 13/03/2013 10:33

Thanks mollie, does make sense to a certain extent.

I think the thing is that with a lot of medicine there's a lot of trial and error Duggs. I certainly don't attribute any godlike characteristics to mr s though, just a clever man who has done a lot of research. But fallable of course. 85% is a good success rate considering the people who've ended up having treatment - lots of miscarriages, age inevitabley catching up as been trying a long time, history of other illnesses maybe... And yes who knows f without treatment it might have worked anyway! Although there are a lot of people who have multiple miscarriages and then with treatment have a baby - so there must be something in it!

Also I guess the difference is that he has (I'm just speculating really) concentrated on recurrent miscarriage rather than fertility problems - even though there are clearly going to be links between the two if nk cells are thought to attack early in some cases. And sadly, again because a lot of time can be 'wasted' with each unsuccessful pregnancy there are always going to be cases where people haven't started off with fertility problems, just recurrent mc, then start to struggle with getting pregnant. It's a head fucjk all round, I realise, when you're on that horrible treadmill.

freelancegirl · 13/03/2013 10:36

Mollie is right too - I never realised either how many other issues there gould be! I hope this is a useful resource for people. I wouldn't have even heard of nk cells myself if it wasn't for the initial recurrent buns thread on here. Although maybe I would have got to it eventually considering my history with thyroid problems.

duggs1976 · 13/03/2013 11:28

Yes as ari said in our other thread we all are where we are and there is little point in wishing you'd made different decisions in the past. Perhaps one day the ultimate goal of "having a healthy baby" is more commonly shared and these doctors with their specialisms are more open to each other. At least quite a few of us have subsequently discovered other issues via other doctors and clinics since being on these boards and that had been the most invaluable thing...

FierceBadIggi · 13/03/2013 11:41

I don't believe I'd have my baby without the help of mumsnet, in fact I'm sure of that. I would have accepted the word of local RMC, who always said it was bad luck and/or age. Even if it wasn't the Shehata treatment that made the difference, without the treatment I would not have kept trying after a 4th unexplained mc.
But if he doesn't consider any issues beyond NKC, well that's just the same lack of open-mindedness that my local doctors had to the the idea that NKC could cause mcs. I don't really understand that viewpoint at all.
So I'm very glad those of you still struggling have access to other doctors and other tests. But as you say it's hard to see time being wasted. I personally wish I'd gone for tests after mc#2, I wish I'd saved myself the experience of further mcs as it has had such a lasting effect even after getting my "happy ending".
Hope Cartoon is doing ok. (())

Lawlee · 13/03/2013 15:38

Hi ladies,

I think Mr. S's treatment is great but it is just one of many that might help, I don't by any means believe there are any magic bullets out there for these problems and what works for one is not neccessarily found to be right for another but I am so glad for this thread and mumsnet helping me get through it all and for all the info sharing and help it has given me! Like Iggi says if I had listened to my doctor I would never have been tested for anything at all. It's a shame we have to fight so hard to find out what is going on!

On the positive side though I had my first early scan today and we saw a heartbeat, so I'm really hoping I will be lucky enough for the treatment to work for me. It was the first time we ever saw a heartbeat, so I feel really blessed even though I know there are no guarantees, and we just have to wait out the next two weeks and see how it goes. She did put me at around 6 weeks which is a little behind my 7+1 but she wasn't worried about it so I'm trying not to be either. I know I ovulated more than a week after the start of my period so I'm sure it balances out somehow. I'm trying not to be excited about it and just see it as a positive first step. Fingers crossed it carries on in the right direction!

Still thinking of Cartoon and hoping you are doing alright.

L xx

TheAccidentalExhibitionist · 13/03/2013 20:21

Great news Lawlee, I'm keeping my fingers crossed for you.

roseandroli · 13/03/2013 22:57

Oh, congratulations, Lawlee. So thrilled for you, that's just wonderful.

Cartoon, I'm wondering how you are doing today. I hope the erpc was okay. I imagine you may not feel like posting, but perhaps when you feel a bit better you will come on here and know that we are all thinking of you and wishing you well.

OP posts:
mollieboo · 14/03/2013 09:28

Congratulations lawlee that's wonderful news.

cartoon thinking of you lots, hope you're bearing up ok.

Hadn't been on for a bit so belated congratulations to sarah on the birth of your baby boy, hope he's well and you're all settling in well as a family.

Waves to all, hope everyone is ok.

brownstag · 14/03/2013 11:46

Tentatively joining your thread, if I may. I'm 4 + 6, on pred and hydroxy. Finally pregnant after 2 years and 2 months of ttc # 2, with superovulation. Knackered, nervous and with blurry vision! Really trying not to mental too much about lines on tests, but failing.
Hallo all!

TheAccidentalExhibitionist · 14/03/2013 12:41

Welcome Brownstag and congratulations.
It sounds like you've had quite a journey to get to this stage already.
This has been a hugely supportive thread for so many women. I hope you find it helpful.
cartoon I'm thinking of you and hoping that the dark days you must be experiment will soon pass. I'm sending you mental strength.

I'm on my first day of TTC with Pred. Bloody timing, I've started with a UTI too, DTD is really not fun with a UTI.
I've been trying to find someone who is willing to give me the Intralipids over here in France. So far it's been difficult. My GP is totally supportive of me trying the steroids and Intralipids in France instead of flying back every month but Intralipids are only given to inpatients by high dependancy unit anaesthetists here. I'm still researching my options.
One of the reasons why I'm struggling to find supportive medics over here is that I can't find any peer review research on the effectively of Pred or Intralipids. I can't find anything to support Mr S theory of the 80% success rate on Pred pregnancies either.
Anyone out there help with a link?

TheAccidentalExhibitionist · 14/03/2013 12:42

Experiencing, not experiment, arsing iPad.

Havingkittens · 14/03/2013 12:45

Brownstag! I just got goosebumps seeing your post. Everything feasible is crossed for you. I really really wish you all the luck in the world!

Great news on your scan lawlee!

Arianrhod · 14/03/2013 13:00

Welcome over here brown Grin. I shouldn't be here myself, I guess, since I'm nowhere near pg, but hey, I'm here anyway :)

accidental your post made me laugh, I have the exact same problem with the iPad, drives me mental!

Chasinrainbows · 14/03/2013 13:44

Hi everyone , not been on here for ages , forgot my sign in details !!! Sorry to see some of you have had good news followed by bad. Good luck to all of you with BFP's and to those of you due soon. Big hugs to any of you still waiting for that bfp. I got my bfp back in sept and am pleased to say I'm holding onto this one at 28+3 . First time I've gotten this far , furthest before was 16 wks and twice at 6 wks. Counting down the weeks now and reading about some of the new arrivals is great to hear , very reassuring . Hoe you're all well ... Waves to all xx

Clabbage · 14/03/2013 21:37

Apologies for lack of personals but couldn't read and run without saying how very sorry I am to hear of your news cartoon. Very cruel. Thinking of you.