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

freelancegirl Sun 24-Mar-13 11:49:59

Hi sarlat, lovely to hear from you. Sorry for what you're going through, it's all very tough. Definitely sounds like you are a candidate for immune issues such as they've been found by those who believe! There certainly does seem to be a huge success rate with the treatment. When I found it, via Mr S, through the MN recurrent buns thread it seemedime every single person diagnosed went on the treatment and - bam - got pregnant, had a baby. Since then I know it's harder for some, I too had one further mc on the treatment followed by my DS, but it still certainly dose seem very successful. I'm pretty sure I wouldn't have had my DS without it. I do believe the success rate is about 85% and considering the types of people - history of recurring mc, time often getting on, other conditions...I think this is pretty great! Of course there are always going to be some cases it doesn't work for but the treatment in itself can be quick, relatively painless and cheap so it's well worth a go IMO! Mr s is now experimenting with other medications as well as steroids and that has worked well for a lot of us too. I've lost count but just on this thread here in the year and a half it's been going we've had at least 30 babies am sure. Ask away if you have any more questions!

brownstag Mon 25-Mar-13 10:03:58

Sarlat, I'm probably a good example of the treatment working. I'd had several miscarriages (and stage 4 endo) before I went to see Mr S, at which point I'd just discovered I was pregnant. He put me straight on the steroids without even waiting for the blood test results for NK cells (which turned out to be high). My son is now 4.
Since then I was trying for 2 years, and only very intermittently taking the steroids. I wasn't conceiving at all. I'd lost faith in the treatment a bit, after seeing from other people's experiences that it isn't always that straightforward. I had recommended Mr S to a friend of mine, for instance, and she hasn't been so lucky, having several more miscarriages despite treatment. Having said that, her NK cells are off the scale.
Recently I also discovered that my ovarian reserve was very low and that I had one possible blocked tube and I'd begun to give up (I'm nearly 42). But I decided to give it one last go with superovulation, and actually take the steroids properly, and anything else going. I conceived and am now 6 + 3. I wish I'd taken the steroids regularly before now. I also took DHEA for 7 months, which I'm sure helped too.

roseandroli Mon 25-Mar-13 14:47:40

Congratulations, jemima! What a beautiful name.

And brownstag, it's really great to hear your story of pred baby number 2.

cartoon I hope the bleeding eases off and you can start looking ahead to next steps.

Best wishes to sarlat and waves to everyone.

Buster76 Tue 26-Mar-13 12:10:24

Afternoon ladies!!
Just wanted to drop in to say hi.
Congratulations Jemima....a very lovely name indeed!
Count down for kittens - I will be lurking for news wink
I am 36 weeks now shock - still cant believe it!!! We are breech at the moment so its looking like a c section between 38-39 wks. If he/she has turned they will induce me at 38 wks because of my factor V leiden but will cover the baby with steroids.
We have continued to be scanned regularly - which has caused more worry I think!! Our 20 wk anomaly scan was fine but since then there has been concerns about baby's femur length - measuring below 5th centile. This can be a soft marker for downs - I had NT screening with came back low risk 1 in 5485. The last consultant we saw said they couldnt rule this out or any other chromosome abnormality?? Anyone else had issues or know anyone else who had similar problems? Hoping we are worrying for nothing!! Baby is measuring a little small but other than the short femur length everything else looks fine.
Fingers crossed to choccy
Congrats to brownstag

xxx D

brownstag Wed 27-Mar-13 14:11:32

Just had my scan 6 + 4. A heartbeat and 5.9mm CRL. Phew! Hurdle no. 1 over!
Buster, I did have worries about Downs with my DS for the same reason. At the 20 week scan his head was on the hundredth centile and his femur on the 25th. They weren't worried; it was me, Googler extraordinaire, and I found various academic papers with ratios, that whatever way I input our results, seemed to suggest Downs. And I hadn't had the nuchal scan, so at the last minute possible I had the blood test, which came back at 1 in 21,000. To be honest, I wasn't completely reassured until he was born, and he was fine, slightly small, at 6lb. He just has a large head presumably, though you wouldn't notice it. His father and grandmother have large hat sizes!

Havingkittens Wed 27-Mar-13 15:14:57

Yay! Good news Brownstag.

Buster, those look like pretty good odds to me. They are probably not able to say for sure because they can only give you odds, not a definitive yes or no unless you have invasive testing. They have to cover themselves for the fact you may be the 1 in 5485, but it's unlikely. Are you going to try anything to turn the baby, like an ECV or Acupuncture/Moxibustion? Mine turned just before the 36 week scan I think. I don't know if it was a coincidence but I spent a bit of time lying on my back with my bum raised on a few pillows and my legs up in the air (a bit like TTC, funnily enough!) and it was after that that I felt a lot of movement and 2 days later my scan showed it was head down. Looks like a good chance our babies will arrive in the same week then!

I'm a bit scared about the sweep, which I'm supposed to be having on Tuesday. I have heard from loads of people that it's really painful.

Buster76 Wed 27-Mar-13 16:55:26

Great news brownstag one step closer smile
Thanks for the reassurance brwonstag and kittens - I know its really unlikely but you cant help but think you might just be that 1! Like you said brownstag until he/she is born is only when I'll feel truly relaxed!

They have offered ecv kittens - really dont fancy that though. Have been going on all fours over my ball!! Dont feel like they have moved though yet. Might try the legs in the air business wink Although I have been thinking maybe a c/section would be best?!

A couple of friends have had sweep, they said it was uncomfortable, bit like a smear - still not nice though. All for a good cause though wink Keep us posted!

xxx

suemays Thu 28-Mar-13 14:46:55

Absolutely devastated as looks like my journey for my 2nd child will be coming to an end. I got a shocking AMH result of 0.57 today so it looks like I will find it hard to get pregnant again. I don't understand it as I have always got pregnant so easily, generally 1st or 2nd cycle of trying. I am guessing that's why I am miscarrying as the quality is so bad. Has anyone heard of anyone getting pregnant with an AMH so low as mine??? It makes me even more upset to lose Scarlet last year as she could have been my last chance.

brownstag Thu 28-Mar-13 14:59:25

Don't despair, Sue. My AMH was 1.14 and I had actually given up after that result, which conflicted with all other hormone results. I tried one last cycle of superovulation and am now pregnant. Obviously I don't know how it's going to turn out but this is the first time I've conceived in over two years. I'm starting to think AMH results are the work of the devil, because they are so profoundly depressing when bad. Louise says she hears of this often; one minute someone has a bad AMH result and then next cycle they're pregnant.
I did take DHEA for 7 months before conceiving so that's something to consider. I personally think I wouldn't have conceived without it.

suemays Thu 28-Mar-13 15:05:31

Brown what is DHEA and where can I get it? Does anyone take co0enzyme?? I am so shocked as I get pregnant really fast so was not expecting the amh result to be so low - mine is a lot lower than yours so I really have given up hope. I have conceived 9 times in 3 years so cant understand it.

BellyD Thu 28-Mar-13 15:29:27

Hi everyone. Sue I had the same AMH result as you after my last mc in Dec having previously conceived (albeit with SO) on two of our previous three ttc cycles, we are the same age, i believe. I think the AMH is not all its cracked up to be - a friend of mine with a similar history to us had her first child with a sub zero AMH and is now pregnant with her second. Dr Ndukwe seemed more to think my antral follicle count (10) was a more reliable fertility marker. Have you had a scan for this? It will prob reassure you.

Brown great news about your scan.

Buster try not to worry, it sounds as though you are being well looked after. Easier said than done, I''m sure.

Happy Easter to everyone x smile

suemays Thu 28-Mar-13 16:45:56

Thanks belly you have made me feel a lot better about things. No I haven't had a follicle count but I am guessing the lister will do that. Waiting to see if we can get an appointment for next week.

Breezyweezy Thu 28-Mar-13 18:39:01

Hi all, not been here for a very long time, but wanted to say sue another one here with rubbish AMH. Tested in June last year and came back at 0.63pmol. Total shock as I had only just turned 34. I have just been rejected for NHS IVF, as they decided my AMH and antral follicle count of 7 was useless and IVF would not work for me. They offered me 2-3 goes at useless IUI. Made an appointment straight away at the Lister and saw Dr Thum who specialises in low AMH and immunology for my VHNKCs and he was encouraging and crucially didn't mention DE once. The odds aren't as good as for someone my age with a higher AMH and better follicle count, but I seem to recall he said we had a 15-20% chance. Just went yesterday to have a whole load more tests done on the immunes side and sperm dna frag and aneuploidy and back to get results and discuss next steps at the end of April. They are very thorough. When are you heading there? I haven't tried DHEA yet as the Lister said to wait and see, but I am on 600mg of Co-q10 daily in the hope that it might improve egg quality. For the DHEA you need the micronised version and it is available only from America. Have a look on FF website as lots of ladies talk about where to get it there.

So happy to see so many people have had their babies since I was on here last it fills me with hope that I might get there one day!

Happy Easter to all.

pinkdragon Thu 28-Mar-13 19:49:27

Oh goodness. I have just stumbled back here and saw I am on your list as ttc baby 2. I went away for a long while - nearly a year I guess but am not sure I am a person you want to be hearing from again as havce got a story with NOT a happy outcome. I did get pregnant in May last year after over 12 months ttc - first month on super ovulation plan. Our daughter was sadly stillborn at full term last month. In total shock and just devastated that after mc's etc that this could happen to us. Not got post mortem results yet so we are not sure whether we have the courage to try again. Going to see Mr S next month to just have a chat about the future and if ttc would be even remotely sensible. Take me off the list for now as it makes me sad to see myself there x x

FierceBadIggi Thu 28-Mar-13 21:52:59

Pink I'm so sorry to hear about your daughter sad sad You must still be in shock. Wishing you lots of strength for the months ahead. X

suemays Thu 28-Mar-13 23:25:39

breezy I have got an appointment on wed eve so hopefully they will give me some hope. 15 to 20% chance is actually quite good. Remind me are you trying for your first or 2nd baby? Did the lister recommend the co-q10? I am wary of taking anything unless they advise me too as I feel my body is messed up enough already. Have you tested your amh since last June?

I feel like my nightmare will never end! Really fed up of this merry go round.

pink sad to hear your news. I can understand a little of what you are going through as I lost my daughter at nearly 24 weeks. We had to terminate the pregnancy as she had a fatal kidney defect and wouldn't survive once born. I had to give birth to her as a still born. It was the most traumatic thing that has ever happened to me. I hope that the pm results are ok and that you have the strength to keep going through the motions every day. It does get easier but even now I can still remember and miss her kicking inside me, that's the worse part.

MegMum25 Fri 29-Mar-13 06:59:45

Hi ladies - not been on here for a very long time. So pleased to hear the heartwarming stories. pink, so very sorry for your loss.

I need some words of wisdom from people who don't know me but know the struggle. My potted history is:
4 x miscarriages then dd born 25/12/08 with pred.
1x m/c then dd2 born 21/19/10 with led and intralipid.
3x m/c last year (2 chromosomal one unexplained) all with pred
Yesterday emergency surgery for ruptured ectopic, lost right tube
38 years old.

Previously my miscarriages have only affected me, so they've been sad but safe. This ectopic was so unexpected and terrifying and dangerous that I really feel the anti has been upped now. I could have died and left my kids behind. Everyone I know has said things to me like 'the universe is telling you something' 'it's selfish o try again' 'let it go' etc. I feel that it's just too soon to decide. Forty eight hours ago I was preparing or my next infusion and all was looking ok, now, I have been seriously ill, in terrible pain and am lucky to be alive. But I'm still mourning another pregnancy loss, and a baby desperately wanted. It's too soon to think of all that, but I am starting to wonder whether it is time for me to stop. I got two wonderful daughters once my treatment was sorted and I wonder whether I should let go of my dram of three... But I also feel people should mind their own business. That 'advice' always comes from those who've not struggled to have babies or wanted to prove their bodies wrong. I could never have known I'd have an ectopic, nobody has ever told me that I was at risk of one and all my other pregnancies have been intrauterine.it could have happened to anyone and is nothing to do with rm. I'm just confused, angry, devastated, weirdly embarrassed and guilty and apart from my husband nobody else seems to understand yes of course I am upset I have been so ill etc etc but its the loss of another pregnancy which is so heartbreaking. Every single time I've lost a baby before, I've just go bak on the horse straightway and tried again, I don't know how else to be. I feel than now medically I cannot do that until i Am well And there is now such resistance from everyone I know, I feel my choice is being taken away from me and my right to grieve etc and I am sad and angry about yet another shit thing happening and in a right old state to be honest. Words of wisdom???

MegMum25 Fri 29-Mar-13 08:10:24

Hi sue
Just read your story. I'm
At lister too and my AMH is 2.4 so
Low. I get pg all the time too though. Anita at Zita west told me is not an indicator of quality per se, only quantity but if you're
older like me and have less quantity then the proportion of poorer eggs versus good eggs is higher so m/x chances higher. But remember, you only need one good egg xxxx

brownstag Fri 29-Mar-13 09:16:51

Pink, your story makes me shiver all over. So sorry to hear what you're going through. It's unimaginable.
MegMum, I would give yourself some time to let this sink in. There's always IVF of course if you want to avoid another ectopic. You're right; it could happen to anyone, and I understand what you're saying about people making judgments about who should be trying for another baby. As I already have one child (and was mentally ill after his birth) I'm always being told I should be grateful for I've got and get on with my life. Generally by people with numerous children.
Sue, DHEA is a naturally occurring hormone that is metabolised into testosterone and oestrogen. It improves egg quality and I also took coenzyme q10 for the same period and I don't think you've got anything to lose by taking the latter. I know Ari was told by Mr S to take it. I got my DHEA from Vitasunn and took 75mg at first. For the first months I had nothing but benefits (increased feeling of well-being, mental sharpness, increased sex drive, fertile mucous) but after 6 months I suddenly developed teenage boy boils that have scarred. I dropped it to 25mg and was about to give it up when I got pregnant.
I had my AMH tested 3 times during this period and the results were 1.5, 2.1 and 1.14, so no improvement but obviously something has changed. If you want to look up more about it, look at the website for the Center for Human Reproduction in Toronto, who really pioneered DHEA supplementation. My NHS consultant had an open mind when I told him I was taking it and I think he's secretly impressed now I've got pregnant. And I also took l-arginine for the first time the month I conceived. It improves blood flow.

brownstag Fri 29-Mar-13 09:24:02

P.S. My NHS consultant said that AMH results of 3, 2, 1 or less were all much of muchness, so I wouldn't say mine were any better than yours, Sue.

MegMum25 Fri 29-Mar-13 09:46:31

Thanks brownstag I've just had a good old cry and feel better. Only you know what to do and what feels right. You keep
On plugging away if that's the dream. I don't think I'd try IVF (low AMH) and all, id probably just roll the dice again, but as you say, too so to tell. Just going to hug my little ones and remind myself miracles do happen. Good luck to all x

MegMum25 Fri 29-Mar-13 09:50:37

Ps congrats on your 6+4 scan. First step done

jass43 Sun 31-Mar-13 14:43:07

Hello, everybody - a delurker here.
I have read all 10 pregnancy on pred threads. During a year. During a year in which I lost 6 pregnancies. After a year in which I had already lost 2 pregnancies (falling pregnant-wise I am your average hated instadiffer, to borrow MN wording). All very early, due to intense hpt-testing after the first 2 losses I now know all my pregnancies took nosedive at 14-15 DPO, never later. Pitiyfully, they then chose to continue in the form of dead trofoblast (a tissue attaching to the wall of uterus, no viable bud inside anymore). I always miscarried at 5-6 weeks.
I live in the part of Europe (rich, developed, rubbish on medical care) where nobody has offered me any testing, basic or immunology. All I get is talk of age (it is par tof my name tag). Even if I have 4 living children, youngest now almost 4, was already 39 I had him, and not a single MC in between all 4 of them - then 8 msicarriages in the row and they say I have suddenly lost 100% of capacity of producing a good egg in 8 tries. How much stupidity must one have to have such a position?
Luckily I come from country where this is done (one of the poorest in Europe, but terrific fertility and antenatal care), so I went back home, had tests done ,and nothing showed up.
But based on what I read from here I convinced my home country doc to try w Prednisolon. She was OK with it, and at my first try, I am today at 16DPO, my test line has got stronger everyday and today, instead of a nosedive, I witnessed a clear jump. Having had numerous (unhappy) opportunities to tie a pregnany test to a blood test number, I would say hcg around 400. It did get to 400 previously, but only after almost vanishing, i.e. baby dying. So, even if I am not yet out the woods - far far from it - I feel really Pred has done a lot of difference already.
I do not know why I googled prednisolone and pregnancy, that is how I found this thread. Probably had noted sth else in my endless searches somewhere else and thats why I googled. And I happened here. I have learned al lot, and I feel now forever grateful for freelancegirl for starting this thread. (I read all other strugglers`threads here as well, but have never posted. )But now I had to. If my baby really survives - it is a life saved. Thanks to this thread. I might stay here for a while, I feel I know you all and I apologize for long lurk - being in no way linked to GB I did not feel as I could just invite me. Am obviously not a native speaker neither, so apologies for an weird-sounding/looking grammar, too

sarlat Mon 01-Apr-13 15:42:53

Freelance - all that information was so helpful. Thank you

Brownstag - congratulations. Yes yours is a story which seems to suggest that there IS something to all of this.

Sue - sorry to hear about the low AMH. But this is not the end. You DO produce eggs and there is so much that can be done. Please don't lose hope.

Pink - I am so sorry for your loss.

Meg - sorry for your recent ectopic. This is noone's business but yours. Allow yourself to grieve and then heal and then decide what you might do next. There is no right or wrong.

Jass - wow what a story, you have inspired me to stick to my guns about what I think and not to e pushed around. Best of luck to you.

I have referred myself to Care and I am now waiting to go there and have the tests - we shall see. But I am certianly going to persue this route - thank you lovely ladies and wishing you all so much luck.

Buster76 Fri 05-Apr-13 21:10:20

Lurking for news from kittens smile

xx

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