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Immune/NK cells - pred thread 28

1000 replies

myrainbowjourney · 06/07/2021 19:56

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

OP posts:
Thread gallery
6
89Hope · 20/12/2021 18:10

I'm the same, I cried on/off for 2 days straight after the last negative. Its such a rollercoaster

myrainbowjourney · 20/12/2021 18:14

@89Hope obviously that was meant to say negative. There's my wishful thinking creeping in.

It is a rollercoaster. Every month I say it's fine if it's not, always next time. And it still hits me like a tonne of bricks.

We'll all get there, I'm sure of it 🥰🤞🏼🤞🏼

OP posts:
Trytryandtryagain11 · 20/12/2021 18:18

@myrainbowjourney omg I know exactly what you mean - I'm so logical in the appointments and fully trust and then BAM I get home, google, pick holes in everything and convince myself I know more than the actual specialist haha! It's hard to trust again when you've had a bad experience with doctors to this point, and it's crazy how each month seems to get harder instead of easier - I really thought by now I'd be able to take this in my stride more! x

BelleB84 · 21/12/2021 15:52

Hi ladies, I'm sure this has been asked before re the pred protocol so sorry about that but..On the protocol Dr S says to test on day 25. On my previous times of getting PG my positive didn't show until about day 32 (am usually on a 28-30 day cycle). Today is my day 25 and I just did a First Response - negative. I am very big in the stomach. Been trying not to read into this as this happened to me in Oct and resulted in what we think was a chemical PG - a midwife told me it can be a massive oestrogen surge. I have some questions on this:

  • Has anyone else had the huge belly/ looking PG but then coming on? I've never ever had bloating on normal cycles and only ever had it when either PG or for that suspected chemical loss. Is this a side effect from the protocol maybe?
  • If you get a negative result on your testing day (i.e. day 25 for me) so youdefo stop taking the meds? I am worreid if I stop eofr a few days, keep testing then got a positive I would've have been off them a few days. Has anyone discussed with Dr S the pros and cons of being off the meds then going back on them with a delayed positive result VS staying on them - which is the least harmful??
Trying to stay balanced/ not be too disheartened/ too hopeful..it's very hard when you like like you're PG but may well not be!! Thanks again
SunDance21 · 21/12/2021 19:40

@BelleB84 it's 10 days after ovulation. I have a 31 day cycle but I don't ovulate until day 19/20, so if I tested on day 25 I would also get a negative. For me I would have to test on day 30.

You might want to track with OPK's and BBT to make sure you're ovulating when you think you are 😊

BelleB84 · 21/12/2021 20:05

Hi SunDance thanks, I had the trigger so it was timed ovulation to happen on day 15 so he specifically said to test on day 25.
What have other pple done on stopping/ continuing the drugs?? Thanks all.

89Hope · 21/12/2021 21:59

I would suggest if you're unsure to email the 'nurses' email address to double check, they usually respond in 1-2 days. This forum is great for emotional support and stories but it's probably a bit dangerous taking medical advice from anyone on it who isn't a professional! (no offense to anyone on the thread!) x

Trytryandtryagain11 · 23/12/2021 16:33

6dpo, tested (what an idiot) and obviously ruined my own day. Arrgghhhh tips on self restraint much needed - I've been ALL over the place this TWW so far - It's our first on the complex plan and I've got all sorts of emotions.

Trytryandtryagain11 · 28/12/2021 11:44

BFP 9DPO (Xmas day)
No line progression
Pretty much BFN now so coming off the meds

This is the 7th chemical pregnancy this year, always the same sort of timing but this is the first on the immune medication. Completely gutted, had such high hopes that this would be it :(

StillTrying10000 · 28/12/2021 13:15

@Trytryandtryagain11 Oww I'm so so sorry :-( It's miserable to have new hope only to have it broken apart. There are lots more meds that can be added to your plan if the initial meds don't work first time. Good luck! xxx

BelleB84 · 28/12/2021 16:15

@Trytryandtryagain11 I’m sorry to hear that. I came on on Xmas Day too despite having a few symptoms/ a huge stomach from the meds I think. I had the same huge stomach in Oct then what I think was a chemical preg but not sure. Can I ask what makes you certain about yours - is it the lack of line progression? When I described my symptoms to Shehata (huge stomach, agony cramps then a late short period) he said it was a chemical but that was it. Here’s to us all having sone better luck soon next year

Trytryandtryagain11 · 28/12/2021 16:41

@StillTrying10000 thank you, that's really good to hear, i thought we might be out of options if this doesn't work! I've got so much hope pinned on next month, but if no luck we have our 3 month follow-up at the start of Feb so it's good to know that here are options we can explore at that point xxx

@BelleB84 urgh it's just horrid timing isn't it, this time of year makes it all so much harder - like you think it MUST be good news because it's Christmas (and only good things can happen) and then when it isn't, it's even worse. I test super early (I can't help it!) and always get a faint positive around 9dpo, then it slowly disappears by around 11. It's the same pretty much every month, like my body is desperately trying but not quite implanting. My NK cells were really high so Dr Shehata was confident this would do the trick but it doesn't seem to be working :( my only thought is that because we both had covid in December that might have caused some sort of issue, I'm clutching at straws though really! Have you been on Dr Shehata's plan for long? xxx

BelleB84 · 28/12/2021 17:22

@Trytryandtryagain11 that’s so strange re your monthly result. It’s funny how our bodies convince us. I’d almost convinced myself I would have a positive result for Xmas after an awful year of 3 MCs (2 definite and the suspected chemical). I had a few symptoms and felt the same as when I was PG then felt cheated when it was a no :(.
This was my first month with Shehata on the Super ov protocol. I’ve just started my drugs again for months two. Here’s hoping. How about you? Have you done many cycles? X

StillTrying10000 · 28/12/2021 18:40

@Trytryandtryagain11 I was exactly the same, I was at my lowest point after going to Dr S and finding it didn't work after a couple of months. I assumed they'd give me all the drugs to counteract the NK Cells but it turns out they don't as some of the drugs get quite nasty and more expensive so they get added over time only if needed. You may be right about covid, did you see this recent news report news.sky.com/story/amp/covid-infection-reduces-sperm-quality-for-up-to-three-months-study-claims-12501291

Trytryandtryagain11 · 28/12/2021 20:12

@BelleB84 oh what a rough year :( here's hoping 2022 is the one for us after all that - I have everything crossed for you next month!
This was our first month trying, I think I would have felt better if we hadn't got the BFP but the fact we did and it didn't work out makes it feel like nothing has changed if that makes sense. A few people have said that it took a few cycles on the plan though so hopefully it's just a matter of time :( xxx

Trytryandtryagain11 · 28/12/2021 20:17

@StillTrying10000 thank you so much, that article is really reassuring that it might be what's happened!
That's interesting re the other treatments too, really good to know there's other tricks up his sleeve. Although, I have had a hell of a time of the Metformin so can't imagine anything much worse being added in! Have you been with Dr Shehata for long? xxx

BelleHopeful · 28/12/2021 21:39

@Trytryandtryagain11 thank you. We are at a similar stage then. Changed the username for more positivity and let’s hope the cycles start to work. Will keep thinking of you and good luck.

StillTrying10000 · 28/12/2021 22:35

@Trytryandtryagain11 Yes since the spring. I feel like a bit of a veteran but it's hard to tell if everyone has been going just as long, much longer, or if I'm just one of the unlucky ones. x

Trytryandtryagain11 · 28/12/2021 23:28

@BelleHopeful will be thinking of you and sending alllllll the best luck to you too - we're in it together!

@StillTrying10000 I'm with you there - it's been nearly 2 years of TTC for us which I can't quite believe, although only about 9 months of investigations really, starting with the NHS and now with Dr Shehata. I feel like a veteran too sometimes, although I know the grand scheme of things it's not that long. Has your plan changed much in the time you've been seeing him? I'm thinking to ask for a hysteroscopy next, although I don't know if that's too extreme xxx

Tumby · 31/12/2021 16:06

Hi ladies 💛🤍

Hope you're all getting through the Christmas period ok. I've not been on here for months as it's all been a bit grim after my last miscarriage.

I'm so sorry also to hear that lots of you are still struggling. My heart goes out to you.

I wonder if I could please ask for some advice - I've just lost faith in Dr S (predominantly bedside manner & the thought of going to the clinic again after my last loss fills me with dread & would be too traumatic.

Do any of you know whether there are any other consultants that follow a similar plan? I.e. intralipids at ovulation & prescribe hydroxychloroquine? Preferably closer to the south west/south Wales if at all possible!! @Daffodil21 did you say you used someone in Manchester? Interested to hear others' plans.

Advice much appreciated & sending love xxx

Daffodil21 · 31/12/2021 16:29

@Tumby yes I used a clinic in Manchester, who do online appointments. I don't know if they do intralipids but they do prescribe prednisolone for recurrent mc. The clinic is called Nova fertility. They're a bit odd to communicate with on the phone, but you can book online and also communicate via email (they are very quick). I'm sorry you're struggling, I'm not surprised. It's so hard ❤️

InvisibleDreamer · 01/01/2022 13:05

@tumby sorry to hear you are struggling. I had to take break from these boards too.

HoldingOn2Hope · 06/01/2022 17:31

Hello ladies!
I've not been on here for a long time, nothing new here just another loss to add to the 4 I've already had :(

Has anyone had the Era, Emma, Alice tests?

@VenusStarr I'm not sure if you're still on this thread...I hope you're ok.

Just an overview of my mc history

3x clomid pregnancies - nhs

1x induced ovulation - Mr Shehata

1x ivf - argc

All ended btw 6-8 weeks.

Not sure what to do next! Book a holiday to a sunny island and stay there!

Hope 2022 is kind to us all x

StillTrying10000 · 06/01/2022 18:27

@HoldingOn2Hope Oww I'm so sorry you've had another loss. I've just booked in for Emma & Alice this month with CRP. I really didn't want to do the tests but feel I don't have any more options after 3rd failed IVF after many previous losses naturally. I'll let you know in 3 weeks if they've been of any value to me. There's a separate forum all about the tests on Mumsnet if you want to know more about them. There doesn't seam to have been many successes as a result of the tests from what I can see on there though. xx

InvisibleDreamer · 06/01/2022 18:49

@holdingontohope I’m sorry for your losses. Has your partner been tested? I only ask because having just had my partner tested it turns out he has a lot of DNA damage in his sperm so chances of miscarriage may well be much higher. Others on here will be able to advise you on all the different tests for yourself better than I can but if you have already had a lot done it may well be worth getting your partner further checked out.

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