TTC or pregnancy on prednisolone or similar part 10

(1000 Posts)
roseandroli Thu 14-Feb-13 10:17:57

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: http://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

Clabbage Thu 14-Mar-13 21:37:37

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.

kittens I was only seeing Mr s, privately.
since this is now my 3rd mc the NHS will start helping us with tests etc. they took bloods from me and dh.
tbh I was in such shock I didn't really listen to what they where for. the surgeon that performed my erpc said he used to run a recurrent mc clinic and suggested asprin and clexene next time. oh I remember the word histology?
duggs I couldn't believe it when I read ur post, 1 hour later, how awful.
this doesn't get any easier does it.
I keep wondering whether the pred etc just prolonged things. I didn't realise either that Mr s would not pick up on these things.
its gutting as I had never gotten that far before. we had 6 scans altogether so getting to see the heartbeat and wriggley baby that many times made it so real to us that our baby was there and we were getting excited. after weeks of trying not to.

duggs1976 Fri 15-Mar-13 07:51:39

Cartoon remind me what were your last 2 mc like ? Were they missed mc or blighted ovums perhaps? Only advice to you is yes neck the pred and aspirin etc. Cant really hurt. But take the nhs testing karyotype etc as can be expensive one but do have a look into more in-depth testing if you can afford to as there can be other factors at play. This does sound very like a chromosomal issue so no medicine could have helped so you will probably get your reason. Yes so cruel. And why do the chromosomal, natural failures happen to the women who have to contend with other medical issues?

Choccy are you out there?

I've been very much like 'it should have worked this time'.
my first was a missed mc second was a blighted ovum. we get preg very quickly and easily so maybe there is something in this unfussy womb theory.

ChoccyPud Fri 15-Mar-13 09:01:50

Yep I'm here... Smiley face on ov stick this morning and everything crossed for hitting target this month. Except legs, obviously wink

I wonder about unfussy womb, we get pg quickly too. Meh. You just keeping plugging away don't you?

Hugs to Cartoon. Waves to all smile

freelancegirl Fri 15-Mar-13 09:46:20

Chas - so great to hear you're doing well!

Brownstag - woo hoo! Welcome back. We have everything crossed for you. 

Accidental - there have been a couple of press articles if that helps? One about the girl who had 18 mc in the Mail online if you google. Also he was once on This Morning with Richard and Judy (or maybe their channel 4 programme). Must get my doc finished and out there. Just got a couple more i/vs to do before a rough edit. I realise it might be hard to get it broadcast but even to put it online might help. 

Choccy and the rest, good luck with the SWI! This thread is for both TTC and pregnancy and anything in between so you are all very included! I wasn't pregnant when I started it. 

Cartoon so sorry for what you're going through but glad you are going to get more help. Chances are this really was a one off chromosome issue. St Mary's were unable to do anything else for me that Mr S hadn't already done but like Duggs says there are other tests out there too.

Arianrhod Fri 15-Mar-13 13:50:54

cartoon So, so sorry for what you're going through - it's so cruel to see the h/b and then find out it's gone. Big hugs for you. Sadly no amount of meds in the world can allow for a chromosomal issue - did the surgeon who did your ERPC say they would test the foetus to see why it happened? (sorry if you already said, if you did I missed it). My third MC we would also have seen the h/b if we'd gone for a reassurance scan just one day earlier, the baby died at 8wks 6 days and we went for the scan at 9wks. I also had an ERPC for that one and I asked for it to be tested, but the surgeon who did my op told me that the lab would almost certainly refuse to test - and they did, I never heard anything back so will never know what happened. Look after yourself, and get all the testing done that you can possibly - you never know what else might be lurking (I'm a case in point, as is duggs!).

choccy That's spooky, you and I are in sync smile Although as we're now (fingers crossed) going for one cycle of DE IVF, I made the probably stupid decision not to trust my eggs any longer and actually avoided SWI this time. Felt really weird to be tracking OV as usual but this time to avoid doing anything about it. And wrong, if you know what I mean.

/waves to everyone, rainbows glad to hear you're doing so well smile

suemays Fri 15-Mar-13 15:20:52

Been lurking for a while but just wanted to offer a hug to cartoon. I know how crap you will feel but things do get easier. I wish that Scarlett had only got to 12 weeks as I can still remember her kicking inside me so I think if a pregnancy has to fail its better if its earlier plus you don't need to go into labour. It's just so disheartening going back to square one but at least you know the treatment worked this time. That's the only hope I cling on to.
My cycles are still not back to normal after 5 months so I have no hope of conceiving at the moment. I have decided I will go for ivf in June with the lister if not conceived by then. My acupuncturist is a believer in the unfussy womb theory as he says at my age (40) it's not normal to get preg as fast as I normally do. He says ivf will rule out my bad eggs so should work. Desperate now!

Will check back on the other posts later!

mollieboo Fri 15-Mar-13 17:30:11

Congrats brownstag on your bfp.

cartoon am thinking of you.

Good luck accidental with ttc'ing.

ari I know what you mean, I just ovulated and we didn't try as waiting after mc but it feels as if going against nature!

clabbage thank you for your kind words the other day, I think about you too and wish noone ever had to lose a child let alone go through countless miscarriages too. sue think about you too and I'm glad things are getting easier for you and hope your cycles settle down soon.

sue re your unfussy womb comment, I'm 36 and feel that I shouldn't get pregnant so easily either, its hard to know though for sure isn't it. I wondered if ivf would be a good idea for me too, but worry that I would still miscarry. Can they tell if the embryo is ok? I asked the consultant at my epu last week about ivf and she seemed to think if I had it they would need to test the embryos first which would be much more expensive. Am a total novice in ivf matters though sorry.

Waves to all x

roseandroli Sat 16-Mar-13 10:59:29

Hi All, thought you might find this link interesting, re unfussy womb theory:

www.women-for-women.org/research/current-projects/recurrent-miscarriage

suemays Sun 17-Mar-13 08:59:16

mollie they can eliminate the poor looking embryos with ivf which could be the ones that we potentially keep accepting. duggs is the expert on ivf with cgh where they grow the embryo for longer and then test it for chromosome problems. This is helpful for people who knowingly carry a defective gene or not had any children before so unaware if they do. Saying that there are still no guarantees as we have no genetic disorders, have a healthy 4 year old so know I can carry a child and yet still had to terminate at 23 weeks. Even with all the extra testing there can be a problem with development which can only be picked up at the 20 week scan. For me, having ivf could eliminate the bad eggs that I will now produce seeing as statistically they will be in the majority. I just don't want to waste another 3 years whilst waiting to catch the perfect egg where ivf increases the chances of finding it.
I asked my gp if I would be eligible for free ivf on the nhs and she said because of my history they would review their normal procedure of not allowing it for a 2nd child. Unfortunately they would not bend their rules. I thought it was a stab in the dark but thought I would give it a go!

brown congrats on the bfp and I hope this one works for you.

rose interesting reading and that they mention immune problems as at Mary's always deny the existence of killer cells. This just confirms my belief in the unfussy womb syndrome.

duggs1976 Sun 17-Mar-13 09:50:33

Hi Mollie yes as sue says my thought process after my trisomy made me terrified it would happen again. So we did ivf with CGH testing. So I did a short protocol round injections etc. Had 19 eggs retrieved which is a lot. 17 were good enough size to fertilise. They do ICSI so as to ensure only one sperm gets into each egg. There was 100% fertilisation rate. (which is high again). By end of day 13 embryos remained. (again a high number) By day 3 only 4 were still developing. They all looked good quality and would have been transferred based on visual appearance by the embryologist. This is where we were a little shocked as I didn't realise the drop off rate would be that high. So they took the polar body of each embryo and sent it to Oxford reprogenics. They test to ensure all 23 pairs of chromosomes are present. Of the 4 tested 3 were all normal and 1 was very abnormal indeed. They were graded 2 so very good ( not excellent). 2 were transferred and 1 frozen.
I got a positive pregnancy result and saw the 2 embryos on a scan with their little sacs. I was following dr s protocol for very high nk cells even though I only tested for high cells. I had had infra lipids before embryo transfer and again on bfp. I was on 40mg pred and clexane injections and cyclogest as standard for ivf. Both embryos failed to get past 5 wks despite all this.
We transferred the third embryo in September this time adding hydroxy and not even a bfp this time.
This is why for me the whole process outlined even with good embryos and all dr s treatment I knew something else wasn't right,
I saw dr Gorgy and he found the hidden infections and DH sperm DNA fragmentation.
When I had asked dr s why he felt things hadn't worked for me he just said was bad luck and one those things. I didn't bother to go back and ask after 3rd embryo failed.
As sue says the CGH testing £3k extra approx. Is great for initial stages but apparently there are still chromosomal and development issues that can happen further down the line at various stages. The egg energy and quality keeps the embryo going the initial few days which explains why older men can conceive with much younger women so easily. A young egg can "repair" DNA damage to a sperm in some cases. Rarely do you hear of a 70 yr old man making a 40 yr old woman pregnant. They are usually 25 yr olds wink
Anyway I hope that helps a little. I totally understand sue and mollies want to test these eggs and if nothing else it eliminates some possible bad eggs. The interesting thing about the good looking but very damaged 4th embryo was how the embryologist wouldn't have been able to differentiate but tbh with 4 embryos I would have had 2 transferred. And then another 2 transferred with the same results but that was just by chance.
Best of luck to you if you need anything more specific do let me know. At least I now know my eggs were ok ish although was a year ago. And at least weve sorted out hidden infections and damaged sperm.

suemays Sun 17-Mar-13 14:11:02

duggs have you tried ivf since having the hidden infections sorted? Sorry but I can't remember if you have.

The stats at my age are not good for having a quality egg so ivf will increase the chance of me catching it but I know its not guaranteed. I think at my age they transfer 3 embryos so even if 2 are bad at least 1 might work assuming they can collect that many. I feel that my body is so messed up with 9 failed pregnancies over the last 3 years that I want to avoid another miscarriage if my body will accept anything on top of any other underlying issues and high killer cells.

duggs1976 Sun 17-Mar-13 18:05:44

Hey sue - well it is thanks to you I even went to dr Gorgy! No haven't done ivf yet it takes such a long time to sort out - medication was is august then you need to wait 3 mths after that if sperm is involved so November was our first month trying again properly. Got bfp in December when in Australia but chemical in jan. Trying to think that was down to bad luck because I did neck the pred on bf just in case because I have a drawer full.
I should be having ivf in may at hammersmith on nhs as now in infertility camp ( lovely ) and am 36 no children and records show we're coming up to 4 yrs TTC. If it does fail we will try one final expensive round at ARGC privately again in the summer and if that fails the adoption plans that we put on hold will start up again and at least we will know we tried damn hard.
So sue where r u doing your ivf?

hi
I still feel a bit lost and in shock. its horrible to be thrown back to the start line. I guess it will take longer this time for my cycle to get back to normal. I have no idea when we will be able to TTC again I will have to wait and some what the hospital comes back with as to whether there is a problem or if it was just a one off.
I only bleed for a few days I know with the erpc u don't get much but I sort of expected more being 12wks.
I've always felt that ive lost babies before. for me they're babies as soon as I get a bfp. but this time feels so much worse and was so much more of a real baby to me. I dread to think how much worse it would be if I'd been further along.

brownstag Tue 19-Mar-13 11:23:01

Cartoontrickster, I'm so sorry you're going through this. When I lost our baby at 12 weeks, I really thought I would never carry a baby full term. But within two years I was holding a baby in my arms, so please don't lose hope.

Thanks to everyone for your congratulations. Everything's still going okay here, as far as I know ... no scan until 8 + 3 because of the Easter hols, and that's 3 weeks' time. Interminable when you have nothing to go on but a line on a test.

SWLondonnanny, are you still on here? I lost all my contacts when I got a new phone and haven't been able to text you to ask how you are.

Duggs, of all the people on here I think I identify most with your endless search for answers. It's so hard to come to terms with what you're going through, or make appropriate plans, when you don't necessarily understand what the issue is. I think this year I got my answers: crap eggs, blocked tube, NK cells, and with that I achieved some kind of peace. And once I came to terms with it, somehow it happened. That's twice I've got pregnant just when I completely gave up. I even gave away all my DS's old clothes, toys, car seat, etc a month ago. Early days yet, of course, but to have got pregnant at all after over two years of nothing is a major step forward.

Clabbage Tue 19-Mar-13 13:50:34

Congratulations Brownstag. Lovely news.

I, too have had a 12 week loss. I think it's the fact that you sort of feel like you are in the safe zone that makes it so crushing. The cliche, falling at the last hurdle springs to mind. If I'm honest, each miscarriage has impacted on me slightly differently. My first is still in some ways the most shocking as you are so naive at that point and don't really get why the world isn't falling over itself to help you somehow. I also think the circumstances and care impact. Sadly, with a tally of 8mc, 6 in a row, my hope is all but evaporated and I guess I expect to miscarry which protects me to a degree. I do however feel that the grief is stored up for down the line. It's almost like whilst I am in the process, I cannot afford to confront the individual loss of that baby. Unfortunately, it's a coping mechanism I learnt following the death of Harry as I would not have functioned without developing it.

Sorry, that was all a bit self indulgent!

brownstag Tue 19-Mar-13 14:55:58

Not at all self-indulgent! If you can't talk about how you feel here, where can you talk about it?
I agree that the first is the worst. When I look back I realise how naive I was not to know that the loss of sickness after 8 weeks was a bad sign, not a good thing. And so I carried on for another 4 weeks carrying a dead baby round in me, while making all sorts of dreams and plans. All this time I 've thought there was a Shakespearean quote that said 'After the first death, there's no more dying then', which describes how I felt about recurrent miscarriage, but it turns out the quote is slightly different, and doesn't mean what I thought at all. But he ought to have said it! Fortunately for me the others were over before they'd hardly begun, so I didn't have time to get too hopeful.
But maybe I now have false hope with this pregnancy, because my last one ended in a live birth. But that was 5 years ago and I'm now nearly 42.
I took DHEA for 7 months before this pregnancy, so I'm hoping that has improved egg quality. After not conceiving at 39, 40, or 41, why else would I have got pregnant now?
That link to the unfussy womb theory looks very promising. But they need to get a move on with some research and treatments. ..

definitely the shock of the first is the worse, but I would say for us, at least the devastation this time matches the first. as we had never seen a heart beat before or gotten so far. I had fully expected this first time on Mr s' treatment not to work but then as every week went past I started to believe that we really were having this baby. then the dreams got shattered again.

TheAccidentalEgghibitionist Tue 19-Mar-13 17:22:25

I'm so sorry cartoon it's understandable that this time it is utterly devastating for you <squeeze>

gransol Tue 19-Mar-13 18:59:32

Hi I don't often post but always read
We saw dr s today marking a year with him I was lucky to fall this time last year first month taking steroids but unfortunately miscarried on treatment making it my seventh loss
Today he took blood for tnf alpha as haven't had a bfp since last march very unlike us this month I took letrozole for the first time and have three good size eggs. Have tried clomid with super ov for 5 months but nothing
If it comes back that in need humira injections do any of u know if u still have to take the steroids each month from ovulation ?

ChoccyPud Tue 19-Mar-13 19:55:38

Hi Gransol if you need humira it's two injections two weeks apart, then he likes to do another blood test two weeks after that to see what your level is. Then you can probably ttc, so it takes a cycle or two. You still do the usual with the Pred unless he tells you differently... Certainly in my case the humira was an addition rather than replacement and its obv for TNF alpha rather than NKCs. Hope that's helpful. Do watch for allergic reactions though, which can happen with humira - eg rash, very sensitive bumpy skin. I wasn't allowed the second injection as I reacted so badly to it. In the biggest ironic twist he told me to take Pred to calm down the allergic reaction!

I've just posted the following on the SO thread, where there's been some v interesting discussion about wider issues including endo scratching/scoring, testing for hidden infections... Sorry for blatant laziness but thought I may as well post it here too by way of update on where I'm at!

I'm in the 2ww at the moment.

I'm not saying never with testing for hidden infections but it'd feel like a total waste of the £1300 hysteroscopy to stop again and take a month or longer(?) out before June when the scoring and humira will have both definitely lost their effectiveness, to get tested and possibly do anti biotics. If the next one fails, then absolutely I'll look at it but as I said before I am getting to the point where to an extent no matter what other tests I could have, I feel I need to look at other options and surrogacy is the most "attractive" seeing as dh and I can obviously conceive and it seems to be a case of an inhospitable environment. Right now, I don't feel a desperate need to have a million more tests or be satisfied I have a definite explanation for it.

Maybe it's partly that I'm so drained I can't take on any more problems or reasons why... I'm trying to keep neutral/positive about getting upduffed again, whilst trying to live my life and not let this take over it completely, and certainly at this stage, when we're ttc and I'm possibly brewing an 8th pg right now, it's just not the time to get all het up about other issues and possibilities... I need to stay postive and remain confident that we will conceive again and remember that I'm entirely comfortable with what we are doing differently this time, ie hysteroscopy and scroring, and keep my fingers crossed and pecker up.

Does that all make sense to you guys?!

ChoccyPud Tue 19-Mar-13 19:59:08

cartoon what you're feeling is totally understandable. Big hugs to you, keep coming here and talking about it. I hope you also have some good support in RL too.

duggs1976 Tue 19-Mar-13 20:44:21

Total sense choccy! In quite intrigued by this "scoring" thing.
I think you are in a good position and can think back to this time last year and how far we've come mentally since then. Some good luck is due that's for sure smile

gransol Tue 19-Mar-13 21:30:32

Thank you that helps a lot
Should get result back on Friday so will see if I need the injections or not
Good luck to everyone this is such a tough journey
X

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