TTC or pregnancy on prednisolone or similar part 11

[Buzzybee123]

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!

Well it's 6.30 am and at 1 am I woke up covered in b..d! Sorry TMI!
No cramps and it's a deep red merlot colour rather than a fresh pink! It's period flow so having to wear a pad! Don't know what to do!

Should I ride it out and wait till Thursday to see dr S or should I visit my local EPAU?

I'm so calm it's scaring me but I think it's because they told me to expect to mc no2 as well!

God if this is ending I don't know if I can do it all again! I'm so tired!

X

Oh team I am so sorry to hear that I'd go to EPAU if you can get there today but I hate the uncertainty more than anything. Did they say to expect any more bleeding from the first sac? Clutching at straws willing it to be ok for you.

Such ups and downs here. Baking that's great news though, really pleased for you. Team, hard to say what to do! I'd be tempted to go to EPU too but it's a horrible experiencce sometimes too - the waiting, the scans... No choice though I guess being on this road. I'm not looking forward to facing it all again either. Keep us updated.

Hi girls thank you for your support!
Just a quick update, I managed to get to the EPAU today. I went in expecting the worse and OMG was I shocked! Baby is fine measuring around 6 weeks with a nice little heartbeat! I have a bleed just above/behind it not sure where that I do t need to worry about. Still early days obviously but I'm seeing Dr S next week so I will have further update then!

They said that the bleed today sounds like it was still from that smaller sack last week! But who knows!

Xxx

Team That sounds like good news potentially, doesn't it? How are you feeling now? Hang in there x

Wow team what a great surprise. Really pleased for you.
And a good scan for baking great news, things are on the up on here.

My scan gave the best of the bad news. No cyst to be seen! So I can go on holiday. Miscarriage is incomplete but can continue naturally. Relieved as I have never had a general anaesthetic before and I wasn't sure if I would be having one on both counts but I am just relieved to be left alone! Small mercies. Have a good weekend all.

That's great news scooter, glad the cyst resolved on its own! Hope you have a good break and get some breathing space.

Team that's great!!

That's good news about the cyst scooter. It's not great of course having another miscarriage but good to get things out the way too. I'm bleeding and getting light cramps still but generally getting my energy back and happy not to be sick and tired any more. Looking forward to losing wright though - pregnancy, steroids and miscarriage really fatten me up!! Very annoying.

Does anyone post on the miscarriage boards? I never know whether to chip in and suggest nkc testing. Someone resurrected an old thread asking for advice. Funny enought it's about 'hyper fertility', something I've not really heard much but speculation about.

team I am so relieved! Glad the bean is sticking in there
scooter glad to hear you have escaped a GA and the cyst has gone.
free I post on the MC board a lot and I do mention NK cells and point people this direction if it seems relevant. I'm v grateful to the person who suggested it to me.....

Village thank you. I'm feeling whiplashed lol! I was genuinely expecting the worst in there. It only seems to have grown over a mm so not sure if that's normal or not. But I have a scheduled scan next week so until then I'm taking it day by day!!

Scooter thank you! I'm so pleased your cyst has gone! But so terribly sad about your MC! But I do hope a nice holiday will help you relax!

Thank you free

baking thank you! Yea so far do good! This is the furthest I've got in 18 months since my 20wk mc! But I still tell myself it's early days yet!

Xx

We're in the same boat ATM, team this is the first time things have looked positive for me at this stage, though I haven't actually MC until about 9 weeks +
Was v relieved when the consultant (actually saw the man himself this time and he is quite dishy!) said he'd rescan in a week, the wait between scans seems like an eternity. I know it doesn't change the outcome. Seems like 4 MC is the magic number for the royal treatment, or maybe I am just interesting now since they don't recommend investigating for NK issues. I did worry they'd be pissed off I had gone over their head and am now expecting them to comply with someone else's protocol, but he didn't seem to mind. I wasn't that impressed with the previous "you lost a perfect baby, we don't know what is wrong with you, we can't do anything to help" I got from the registrar. Hope we both get good news next week too.

Baking where are you being scanned? Well done to you if you're getting weekly scans on the NHS! The consultant should be relieved and delighted if someone else's protocol has proved to be the solution for you . Everything crossed for next week.

team taking it day by day seems like a pretty sane strategy. How many weeks are you now by dates?

Baking dishy Drs make it all worth while! Lol!! Have you always mc naturally? It's good that they are scanning you again next week!
I have come to the conclusion that you dont ask the NHS you TELL them what you want! At the end if the day! We have paid and are still paying for it!
That was one of my biggest worries having this treatment, that I wouldn't get looked after properly on the NHS!
A couple of months ago I saw a fertility specialist on the NHS regarding the shap of my uterus and we discussed Dr S and his treatment and he said to me that he wanted to wait and see if I had a successful pregnancy in his treatment! And he seemed really keen on knowing all the details! I was so shocked but impressed!

It hurts when they say things like that! There is nothing we can do! Why treat MC like nothing can be done about it? When clearly it can be! Have you checked your due date yet?

Village it's the best to protect myself I think! Taking it day by day and each week at a time helps! I'm measuring 6 weeks approximately they said by my dates from peak on my machine that's right as I OV late in my cycle last month!

Xx

Yes, I'm being scanned at the local NHS RMC clinic. I've always MC naturally but in more recent pregnancies have been having scans to see how things are going. By 7-8 weeks has always been measuring weeks behind, poor HB etc though don't actually lose until about 9 weeks, So it's positive progress to be ok at 8 weeks.
Haven't dared do a due date or book with MW yet, though consultant old me off for that. The number of times I've filled in that bloody form only to have to tear it up a week later!

team that is such great news and I really hope your scan on the 31st brings even more good news. I admire your PMA! Not long now!

baking it all sounds SO promising. You must be holding your breath, trying not to hope too much, but it really does sound good - such positive progress, as you say. I don't book in with my MW either till I'm past 9 weeks (that seems to be my cut-off point too. If I get past 9 weeks I know I'm in with a chance.) Very, very exciting. I'm crossing fingers, toes, everything for you.

Sitting here today waiting for the storm which is supposedly going to sweep the southwest with 80mph winds. So far just a frisky breeze!

Waves to everyone else.

Baking it all sounds like you are in the right track! I know what you mean about MW! Every time I've done I've had to cancel. It's weird I'm expecting it to all fail again this time again! You know 2 scares with bleeding and then the third, that will be it! Hubby is away with work so my mind is running wild!

I vowed to try and treat this pregnancy as normal as possible like people who have no idea what bad things can happen!

Thank you Village fingers crossed

X

Luna how did your follow-up today with Mr S go?

team hope you are doing ok today; it's tough to be alone with these fears and uncertainties, especially when you've had a scare and are between scans. Can relate as my DH is often away for work.

Hello to everyone else. Seem to have survived last night's storm without roof tiles blowing off or garden fence falling over!

Hi All,

Team and Baking am so happy for you both and keeping everything crossed and sending positive thoughts your way.

Thanks for remembering Village. Due to the crazy weather we didn't manage to make it to the appointment as all trains between Peterborough and London were cancelled. Left a message on Mr S's office answering machine and Cheryl kindly managed to arrange a telecom with Mr S instead and emailed over copies of my test results so we were all looking at and discussing the same thing.
Turns out I have a higher level of NK Cells than I initially thought and also high 2nd level (which I had never heard of).
My protocol is going to be a mix of the 'Very High NK Cell' programme and the 'Complex NK Cell' programme which just sums me up . He's starting me on Hydroxi, together with 25mg Prednisolone. He has also said that I should strongly consider Super Ovulation but I think we want to try without first.
Has anyone tried the Intralipid infusion as part of pre conception rather than from a BFP? Not sure if it is just overkill on my part.

Am now just waiting for the prescriptions to arrive in the post so that I can start the pill popping. Am sure that I'll be rattling by the end of this

I had intrallipids before bfp with zita west but that's without any steroids. They are then repeated every 6 weeks if no bfp. I got pregnant just after the first lot but miscarried. Zita west start steroids from bfp and say you don't need both before then. All the clinics vary in their treatment so its hard to know which one is best! Intrallipids can get very expensive!

I had intralipids pre-ET, the clinic say to do it 7-10 days beforehand, and low dose steroids for a month before ET too.

I wonder what the difference is between Mr S's 'very high NK cell' programme and 'complex NK cell' programme is, do you know?

Ari it seems to be the addition of Omeprazole 20mgs daily and an increase of Prednisolone from 25mg to 40mg from BFP. He is also including Hydroxi from pre conception.

Sue I am so confused as to what to do/take and who's advice to follow. Like everyone I want to give myself the best chance.

Good news Luna sounds like you are getting somewhere. I think you need to find someone you trust and put your faith in their programme. They all vary a bit but so much of this is cutting edge stuff I think the evidence just isn't there yet as to what is the "right" dose or the "optimum" protocol.
I suppose my question about all the pre-conception stuff is what happens if it takes many cycles to get pregnant? If you are having ET then that element is taken out of it.

team am I right that we both have a scan on Thursday?

Thanks Baking - ignorance showing here but what is ET?

embryo transfer (I think)

Hi Luna, really glad you managed to have the consultation in spite of the storm of the century! If you don't mind me asking, why was Mr S suggesting Super Ovulation for you? I'm curious because it's something I'm potentially interested in doing and I'm wondering in which circumstances it would be recommended.