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

tums I'm sorry. hope your doing ok.
feels odd to post my news but here we go.
I saw Mr s for a scan on Wed all looking good at 17+ 4. I have been 'signed' off now. so just NHS care for me. I simply cannot afford to continue seeing him as much as I would like to. I'm off all meds now apart from asprin and vits. far from being 'safe' but getting there with each day and i am making myself believe that this is it.

freelancegirl Fri 16-Aug-13 16:15:56

Cartoon that's great news! Really pleased for you. It's madness being signed off isn't it. Good news though, hope you have a nice cold grape juice xx

Havingkittens Fri 16-Aug-13 18:50:49

Accidental and Mel I will post those books next week and PM you with postal costs and Paypal address if you're registered.

Congratulations Cartoon, it is indeed a strange, liberating but scary feeling being sent out into the world of "normal" pregnancy.

Tums, sorry to hear your news sad

Mel3062 Fri 16-Aug-13 19:26:48

Great thanks kittens. Cartoon congratulations x

Tumtimes1 Fri 16-Aug-13 20:42:05

Thanks all! I'm fine now feel more myself and onwards and upwards.

Cartoon that's great!! Yay! Really good news xxxx

thanks tums, mel,kittens and free. it is very strange but my bank balance will love it! there's a my ultra baby clinic just up the road from me if I feel the need for a scan. the prices there are a fraction of the price of a scan with Mr s.
mollie thinking of you.

mollieboo Sat 17-Aug-13 09:21:43

Thanks again for lovely messages of support.

Cartoon that's lovely news, I'm really pleased for you.

Tums sorry to hear your news.

Xx

mollieboo Sat 17-Aug-13 10:05:50

Hi again, my mind is going through lots at the moment. I keep wondering how I'll ever try again, but also keep wondering how I'll manage to wait 3 months until I can try again!

Anyway I know there have been lots of discussions about the best doctor to use. I felt in safe hands under Mr S and my lovely nhs fetal med consultant, and would never have got to 20 weeks without Mr S. It looks highly unlikely that this loss was due to immune issues as Joey was growing properly, it doesn't seem at all related to what happened with my pregnancy with Oscar. But I don't know whether I should try Dr Gorgy just so that I'm not taking any chances. Money, location and also the sheer effort of diving into yet more tests, diagnoses, meds etc is scary and exhausting especially if it doesn't work yet again. Not sure anyone can offer advice or comments, I know I'm wittering on a bit! Has anyone had a 20 week loss similar to mine where the baby was doing well and then died suddenly? Was a reason ever found? Was it related to immune issues?

Thank you for reading, appreciate all of the support on here x

Mel3062 Sun 18-Aug-13 07:03:46

Mollie I can't even imagine what you have been through or the emotions you must be feeling but I'm sure I speak for us all in that we are here to listen. i have a daughter who was born at 29 though waters went at 25 so I'm very grateful to have her then lost at 16 weeks and had 4 early losses - 1 on treatment after nk cells and tnf were diagnosed.
I hope you get some sort of answer.
What treatment were you on may I ask?
I'm under mr s as you know and suffered mc under his care though I still hope treatment will work its just a case of finding the combination!
I too have pondered about seeing mr gorgy to rule things out but oh thinks we should have faith with mr s abit longer. I'm going to see prof quenby tomorrow. I just feel I need to do what I can, I'm 38 with a nearly 19 year old I don't feel I can wait especially as it takes a year to 18 months to conceive sad
You are not wittering it's good to get your thoughts out and sorry I can't really help with your questions. Is mr s doing any further testing on joey? He made me feel bad that I let the nhs did it as they didn't get any results sad
Whatever you decide we are all here to support and are so sorry you're having to deal with this it's so unfair sad big hugs xx

duggs1976 Sun 18-Aug-13 07:34:15

I can't imagine your pain as I have not suffered late losses my latest was 12.5wks however I can understand needing answers. Dr S programme does seem to work for some people and some not. I think the issue is that proof is so difficult and there doesn't seem to be a "proven scientific" pattern which is why it is probably still at the stage it is. Honestly, I would say elevated killer cells is an issue around conception and mc before 9 wks - although he does seem to mention late mc as a potential but with little sturdy, consistent evidence to back it up. I think looking into why people had elevated nk cells you would gets different reasons and therefore be able to potentially tailor treatment programmes. He's not in that game. It seems dr Gorgy, dr Nudwuke and Prof Queenby seem to be a bit more open to wider issues so after having been through what you have then a one off consult with one of the above with you current tests so far can only be a reassurance I should imagine. Sue saw dr Ndwuke and I think she feels more confident of her path now, although am sure she will explain further. Just wanted to say it is totally understandable for a few hundred pounds you'd want a second opinion and a potential new angle. Sending all our strength your way. X

mollieboo Sun 18-Aug-13 19:07:32

Thanks ladies for your replies.

Mel you must have been terrified when your waters broke at 25 weeks, what a rollercoaster, what a relief that she was ok. My son Oscar was born at 29 weeks too, I lost him when he was 5 months old.

Treatment I'm on under Mr S is prednisolone 40mg, hydroxy, aspirin, Clexane, progesterone and intralipids every four weeks up to 32 weeks. Mr S is on holiday at the moment. The hospital are doing tests but the consultant said we might never know what happened. I'm 37 and first got pregnant at 33 on honeymoon, so sad. I get pregnancy quickly but it hasn't got me anywhere obviously. I do take heart that there are always celebrities having babies in their forties.

Thanks Duggs for the info. Yes it is all still a bit of a trial I think isn't it. I think my premature birth with Oscar was immune related, Mr S thinks that high nkcs attacked the placenta, Dr Beer mentions it in his book too. He did say though that he's not God and he can never say for certain, but that's what he thinks happened.

Money is an issue for us and travelling to central London, but needs must. I think Dr Gorgy or Dr Ndwuke would both be good to see so we'll have to decide on our next course of action. A local ivf clinic does sperm dna fragmentation testing, I have no idea if this would be an issue for us but I might get dh there to rule out another thing. Hard to know which way to go isn't it.

Waves to all x

Mel3062 Sun 18-Aug-13 19:53:55

Mollie so sorry to hear you lost Oscar too sad horrific for you.
Yes it was scary, we'd only been married 6 weeks when I went into labour so it scared us for a good 7 years.
Where do you live mollie? I'm in York so yes travelling is a nightmare isn't it. I think I'm going to try persuade oh to have bloods done with me with mr gorgy. Mr s said it was prob nk cells for me too or maybe a simple infection causing waters to break.
It is hard and I think oh just thinks I'm clutching at straws but I have to try as its not just bad luck, the money will only last so long though sad
Sending you hugs and strength, if you are like me researching the next path is what keeps me going x

freelancegirl Sun 18-Aug-13 19:58:47

If any of you ever need a place to stay overnight in London do let me know. Please. It's not just an empty thing to day, I would really love to help. Im still an hour or so drive from NLC but only a half an hour away from Harley St xx

Mel3062 Sun 18-Aug-13 21:41:05

Freelance girl that is such a kind gesture thank you. I can get a train straight to London which is ok but hate going to new life and unfortunately intralipids can only be done there though hoping to do it a dif way in the future! X

mollieboo Sun 18-Aug-13 22:16:19

Free that is a very kind offer, thank you so much. I'm in Cardiff so a lot nearer than Mel. It's fine getting to Surrey by car but central London would add to the costs with train fares. If we do need somewhere to stay I will ask, thanks again.

Mel it's been too tough mentally. I'm thinking either we go for further testing and give it one last go, or we are chatting about adoption too now as I just don't know if I can risk going through more heartbreak. I'm all over the place. Keep us posted if you see Dr Gorgy, he sounds excellent doesn't he.

freelancegirl Sun 18-Aug-13 22:41:24

I do really mean it, to any of you.

Sorry Mollie, it's really shit. Are they running sky tests on Joey?

freelancegirl Sun 18-Aug-13 22:42:33

Can someone on a computer do a new thread please? We are about to finish number 10!

mollieboo Mon 19-Aug-13 09:37:13

Yes I've had an amnio, lots of bloods taken and also Joey will be tested. Have doubts about anything being found though.

TheAccidentalExhibitionist Mon 19-Aug-13 20:50:31

After yet another disasterous appointment with a French gynaecologist, to asist me with my infertility issues I've decided to throw my lot in with Mr S. I had hoped that someone in France would be willing to prescribe me some Clomid but no, he looked at me and said 'you're 40, what do you expect?' Bastard.
I'm seeing Mr S at the new life centre on Saturday and I'm actually quite looking forward to it.

My health has suddenly deteriorated this summer. After a few years of back pain, I now have serious multiple joint pain, fatigue, infections and a number of other symptoms. It's clear now I have an auto-immune disease and so I'm waiting to find out which one. I thinks its either Lupus or ankylosis spondylitis. I have tested positive for lupus but have many of the symptoms of spondylitis . I don't want either of them and I'm pretty gutted and feeling worried about the future. Worst outcome? I have both.

I guess it explains the high natural killer cells though. Does anyone else have an explanation for their high natural killers cells?

Sorry for the negative post sad

Mel3062 Mon 19-Aug-13 21:09:46

I'm so sorry what a horrid man to say that!! Good luck with mr s. I saw prof Brosen today for uterine test and he said I was "interesting".its interesting what you say about ankoylsing sponditus as my father in law has that and rhemotoid arthiritus too and my hubby also has one of them as it runs in the male side. Is it thought to cause mc??
I'm sure mr s will help you x

Buzzybee123 Mon 19-Aug-13 21:19:55

accidental what a fecking cheek, I hope all goes well on Saturday with Mr S

TheAccidentalExhibitionist Mon 19-Aug-13 21:52:54

I think auto immune diseases can cause high natural killer cells but lupus is known to increase miscarriage rate and complications in pregnancy.
I'm not sure why I hadn't heard of lupus being a possible cause and I'm not sure I've ever been tested for it before now, despite me having immune tests.

With it causing miscarriage I would have thought it would be a standard test? Apparently though the marker for it comes and goes depending on whether its active or not. It's possible that I have been tested and it's come back negative in the past.

Getting pregnant at 40 is not normal in France. The health service is far more accessible than in the UK but their attitude is pessamistic and negative and they are not as progressive. Saying that, they have limitless budgets so I would rather be ill in France than in the UK at the moment. They don't spare the horses. Between me and my DS with Autism we seem to see a different specialist every week. My medical French is excellent grin

Buzzybee123 Mon 19-Aug-13 22:23:48

I shall set up a new thread ladies

accidental I have heard that the health care in France is good, I am surprised that they think 40 is old for pregnancy there though

mollieboo Tue 20-Aug-13 10:56:19

Hi accidental, what a cheek the gynae saying that to you. I really hope you have a good appointment with Mr S, I'm sure he'll be a lot more positive. Sorry to hear of your health issues, sounds tough for you.

I see gorgeous baby boys everywhere I go, it's heartbreaking. I'm sure 90% of all babies are now boys! I know we have a lot on here too.

Just would like to say thank you to suemays and teamdozie for chatting to me by private email, it's been a big help.

Waves to all, see you on next thread x

freelancegirl Tue 20-Aug-13 12:03:44

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