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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:
Iggi101 · 30/05/2013 11:17

Regarding the scan question, the "plan" I had involved scans at 6, 9 and 15 weeks. He suggested I get the 15 week one done locally as I live so far away. I knew from reading books about miscarriage that I had a lot of "markers" for having an auto-immune disorder, hence why I wanted to go to a NKC specialist (rather then Lesley Regan, who local doctors reccommended). But if a while on the nkc treatment plan hadn't worked, I'd have moved on to other options, as many of you have done.
Glad to refind the thread incidentally, it had dropped off my list (been doing too much ranting on aibu!) Waves and lots of luck wished to everyone.

cartoontrickster · 30/05/2013 11:38

tums I'm sure you can always email for a prescription rather than having to see Mr s.
I'm just starting to see how difficult it can be having 2 different doctors 'on the case'. generally I seem to be the kind of patient Mr s likes, gets pregnant quickly and treatment works. we can't say it didn't because it was chromosomes that caused my miscarriage. he has got me further than I ever have before. as I mentioned he was a bit off when we talked about my NHS consultant.
thing is my NHS consultant wasn't impressed I was seeing Mr s either.
according to her intralipids are of no benefit at all. she will refer us to st Mary's but thinks a bit of baby asprin and positive thinking will do the trick Hmm .
it just seems none of them like to work together.
an I right in thinking though that they do test for nk cells at st marys? can I see Mr s there?

duggs1976 · 30/05/2013 13:09

No cartoon unfortunately because the nk cells in the uterus cannot be proven the nhs don't test for them. Apparently nk cell elevation can be found in more than 60% of people. Dr Gorgy does actually offer the uterus specific test if required.

I wouldn't get too worried, most doctors are aware of all these things and most are ok with things, no doctor likes to be second opinioned (norm in the USA) but some are more vocal about their feelings than others.

Where ever you end up going, steroids for a while are no big turmoil and we are lucky to have this info sharing. You'll be fine.

Yes cartoon think u r spot on. You are exactly the kind of patient dr s likes. Come in , get pregnant take pred have baby. End of story.

Who would have thought this group would be seen as the aspirational bunch eh? Thanks

cartoontrickster · 30/05/2013 14:28

ah ok thanks duggs that's good to know. I have a lot of hope for this pregnancy and am trying my hardest to keep the faith. but I know that I will let st Mary's treatment me next time, if needed. (fingers hugely crossed I won't need to).
for me Mr s is wonderful in many ways, but I think its such a shame he's so closed off to other things and his bed side manner is not always the best. I really feel for all the ladies who are having a tough time with him.

Tumtimes1 · 30/05/2013 15:50

Thanks all for the replies. The advice on here is so valuable and it's a blessing I have you guys with your knowledge to go to for your experiences. Thank you once again.
Ok, I plan to go to the consultation with Gorgy next Wednesday and see what he says, I'll tell him what shehata prescribed and show him my results. Then I suppose I'll know more then and will decide the best plan of action from there. Xxx

Tumtimes1 · 30/05/2013 15:52

Can I just ask one more thing please , is the NK cells in uterus different to the average NK cell test dr S offers then? Xx

duggs1976 · 30/05/2013 16:03

It's all a bit controversial tbh. Both dr s and dr g agree the same principles, dr g follows dr beer's chicago test protocol. He trained with him in US or something. So you won't get conflicting advice, really, just more in-depth info from Gorgy. Apparently if you have nk cells and are being treated anyway he sees little point in further testing. But if you show nothing you can do uterine lining test.. Which can be tricky to get results from. But don't really worry about that at this stage. He is very experienced. He does do something with the nk cells which tests how you respond to intrallipids and ivig some people intrallipids are not strong enough and they will need ivig some intrallipids are enough. All this is part of the testing. He doesn't seem to mind other doctors input as he says he gets quite a few from shehata that are looking for more answers so h isn't phased by much it seems.

Tumtimes1 · 30/05/2013 19:42

Thanks Duggs xx

buzzybee123 · 31/05/2013 13:56

hey ladies it looks like my pregnancy is failing, I just wanted to thank you all for your support, it has been appreciated

freelancegirl · 31/05/2013 15:30

Shit. I'm so, so sorry to hear that. How far have you got this time? Will it be your first mc on the treatment?

cartoontrickster · 31/05/2013 15:35

oh buzzy I'm sorry to hear that. are you sure, what's happened?

TheAccidentalExhibitionist · 31/05/2013 16:02

Oh BuzzyBee I'm so, so sorry to hear that. Was this an IVF pregnancy? I know you mentioned unthread that this was going to be your last attempt Sad
Please look after yourself and keep us posted on how you are.

buzzybee123 · 31/05/2013 16:04

i'm in limbo land, the scan was a little off but I have no more symptoms, and the digi has dropped from 3+ to 2-3 weeks, last time I miscarried I had a headache and then my symptoms stopped, that has happened this time too, plus my cat is being very affectionate which is not like her, I don't think the sharp pains are a good sign either, I have to wait 2 weeks for another scan Sad

Arianrhod · 31/05/2013 16:20

buzzy PMd you but just wanted to send you hugs and strength for what you're going through xx

freelancegirl · 31/05/2013 19:54

What a horrible wait Buzzy. How far out was it? I don't think symptoms or the digi are 100% indicators though.

buzzybee123 · 31/05/2013 20:03

accidental it was DE IVF

free I just feel different, my boobs hardly hurt but were painful yesterday, there was a sac but I measured 5w when I am 5w4d, I just feel normal :(

cartoontrickster · 31/05/2013 20:09

buzzy isn't it hard to be that accurate that early. I've also heard you cant always trust a digital. the wait is awful, sorry this is happening to you.

buzzybee123 · 31/05/2013 20:13

it just feels all over with to be honest,anything here on in would be a miracle

freelancegirl · 31/05/2013 22:51

I understand the expect the worse and yes your instincts might be right. But there is always a chance too. Awful wait for you.

Clabbage · 01/06/2013 19:08

Oh buzzy. I so hope you are wrong. Wish I had some wonderful piece of wisdom to impart, to get you through. Just know that we are here, with a virtual hand hold.

buzzybee123 · 04/06/2013 13:55

hey ladies I had some spotting this morning so went back to EPAU, they scanned me again and although it is measuring 2mm too small there was a heartbeat so I have to wait until next week for another scan

TheAccidentalExhibitionist · 04/06/2013 13:57

Buzzy cautious congratulations. The fact is that you know more than most women should about early pregnancy loss so I can understand that this is an ongoing worry. I'm keeping my fingers crossed for you.

cartoontrickster · 04/06/2013 14:53

oh buzzy that's good news, there may still be hope yet then. fingers crossed for you.

mollieboo · 04/06/2013 15:57

Hi ladies

buzzy that's great news on your scan after you were so worried.

cartoon congrats on your good scan news too, feeling ok?

clabbage congrats on your bfp, really hoping this one works out for you. How are you doing?

I'm 11 weeks tomorrow, had my dating scan yesterday and am due on 23 December, I hope its the best Christmas present ever. I've only got this far before when pregnant with my son Oscar. I was trying to not get my hopes up but after seeing baby wriggling on screen its pretty hard not to of course.

buzzybee123 · 04/06/2013 16:04

mollieboo Congrats on your scan :)