Immune/NK cells pred thread #32

[VenusStarr]

Hi everyone. The last thread is filling up. Have tried to tag everyone who posted on the last few pages, but feel free to join / tag anyone I missed.

@Gizmo1983
@fleur89
@Sunflower360
@MotherOfShihTzus
@lozzmax
@HopefulH
@kea1990
@Sprinkleofbabydust
@Newbeginnings22023
@star2022
@RumandSpinach
@Ems123456789
@MamaW05

Love to all ❤️

@Thornters keep us updated, but thinking of you either way and if it does arrive i hope that glass of wine in the sun tastes delicious.

just had my husbands dna frag results and they were really good - no further treatment needed. I think it’s a relief for him, but in some ways we know for sure that’s all on me and I feel bad for that. I know we are in this together and he couldn’t be more supportive - just feels exhausting and maybe a bit more pressure on me.

Little update from me — all went well at the scan this morning. Measuring 5+6, so one day behind based on when I think I ovulated and saw a heartbeat. She wants me to go back next week just to check all is growing as it should as based on my LMP dates I should be further ahead but said it’s v much precautionary as tracks to my ovulation date.

Feeling ever so slightly more positive, although of course it’s still very early days and the spotting decided to return this morning just to troll me and increase the anxiety levels. But for now, all seems to be ok 🤞

@elarcoiris gentle congratulations, my first born was a week behind Vs LMP but similar to when I thought I ovulated. Wishing you the very best over the coming weeks, fully understand the anxiety between appointments.

TW Pregnancy & Live Birth

Welcome @v60 - you have a similar story to me. 1 child then 2 MMCs (very complicated ones with RPOC, infection, scarring post MVA, the works...). Diagnosed with high nk cells but no other issues. Am seeing Dr S who suspects Covid triggered my high nk cell activity / reactive arthritis / overactive immune response, as I was absolutely fine before I caught it.

I'm currently 30 weeks pregnant and was on Dr S's complex protocol which involved intralipids (no side effects), prednisone (severe insomnia & mood swings while on and crushing exhaustion while weaning off but no other side effects), omeprazole (no side effects), baby aspirin (no side effects) and progesterone (sore boobs and night sweats while on).

Still feeling nervous as its been such a bumpy ride and I've been diagnosed with other issues along the way (high uterine PI resistance inhibiting blood flow to the baby at 20 weeks - thankfully it resolved itself but I lived in fear of losing him for 8 weeks while waiting on additional scans, then once that resolved i was diagnosed with anaemia and possible gestational diabetes (have to repeat the test next week)).

@elarcoiris yay!!! I know every step is fraught with nerves but at least the first scan is crossed off the list now. Sorry the spotting has returned. Was it Dr Silva Edge you saw? Did she recommend anything? Great that they’re keeping a close eye on you and fingers crossed that little bean’s heartbeat is even stronger next week.

@Jecca88 it’s so easy to say that you shouldn’t feel like the burden is on you but I understand why you feel like that. Good news though that your hubby’s results were good and means no additional costs. My period started yesterday and the glass of wine was some consolation at least. Fingers crossed for next cycle.

Thanks for the welcome all. It’s the best-worst club indeed. And thanks encouragement that you’re all on a similar cocktail and no adverse reactions to the intralipids. I think I’ll just go for it when I get a positive test, that’s what the doctor is recommending for now. Strangely it seems like I’m not ovulating this month, although I’ve got flu so who knows. I’ve been using OPK sticks but never seemed to get much of a peak.

@Jecca88, I can really identify with the pressure seemingly all being on you, it’s a weight regardless of how supportive my husband is.

@elarcoiris lovely news. One day behind is miniscule - measurements can vary from one practitioner to another and machine to machine. A heartbeat at this stage is good but totally understand your anxiety. Crossing everything for you.

Thanks all! It’s really lovely being able to talk to you as we literally haven’t told anyone else yet. Have been much more open about previous pregnancies/losses but for some reason this time just don’t want to share until we’re more sure it’s positive news.

@Thornters Yeah, it was Dr Edge and she was fantastic — totally understood my anxiety and was very quick to tell me it all looked good. Have my next one with her too which is reassuring. Sorry to hear this wasn’t your month, but keeping everything crossed for you for next cycle xx

Hi everyone, hope you're all well. Sorry I've been awol. I was unwell last week, some kind of weird, fluey virus. Hope you're all well.

We've booked a holiday for the end of August over my birthday 🥰 can't wait and I'm genuinely excited. Going somewhere neither of us have been before. So that's really nice to have that as a focus.

@Gizmo1983 I'm so pleased you got to test some blasts. Keeping everything crossed for you that you get some positive news soon 💕

Lovely news @elarcoiris ❤️ I hope you're feeling OK.

@Thornters I'm sorry af arrived, I hope that the wine was good.

Welcome @v60 I hope your ovulation happens soon.

@Jecca88 how are you?

Good to hear from you @fleur89 I hope you coped with the heat this week

@Newbeginnings22023 lots of love, hope you're OK. Did you manage to get some Doxycycline?

@Rainbowsunshine81 how are you lovely? 💕

@lozzmax hope you're well

Love to all ❤️❤️

Thats great news @elarcoiris - first scan is always the scariest for me - i am glad you got to see heart beat.

@Thornters i am so sorry to hear about AF. How are you feeling about next month? I am glad you had that wine. My Treat is always a margarita :)

@v60 i know - on one hand i am grateful its not another thing against us and we dont have to spend time and money on treating it, but yeh it just feels like i need to explore more what else is wrong except the NK cells.

Hey @VenusStarr sorry to hear you've been unwell, hope you're feeling better. Oh lovely - a holiday at the end of summer is defo something to look forward to.
Thanks for asking How i am 😘I have to do another pregnancy test today and hoping for a negative following the MVA. I am now looking into a Hysteroscopy as I have had three D &Cs and just convinced that i have some scarring following my first miscarriage. I have asked the GP for a referral for this. I also discussed Predisinole and trying to get the GP to write a note to say they are OK with me having it whilst on sertraline- so DR S can prescribe when i go for my next consultation. I am still waiting on Genetic testing and hoping it comes back within the next 5 weeks.

Finding this chat really helpful and know that there is hope and other things we can do. It gives me a bit of an illusion that i have some control.

update - Negative test, so can move on now 🙌

Sorry to hear @Jecca88 but here's to next cycle

Still no ovulation for me

@VenusStarr I'm not too bad thanks lovely 😘 had a counselling session through my fertility clinic which was good and might possibly be going for another transfer in August depending on when my next period arrives. Still not 100 per cent certain if I do want to go through it all again. If we did then most likely with my consultant being in agreement we would transfer the remaining three embryos as this would ultimately be the very last time. We've been on this journey coming up to 4 years now and I think there has to come to a point where we can draw a line under it.
I hope you're feeling better 💓

Hi @VenusStarr thanks so much for checking in ❤️ I have not started on the doxycycline yet but I started the latent TB treatment and had to stop it a week afterwards unfortunately. It was giving me awful side effects (insomnia, very itchy/warm skin, feelings of depression, etc). I’ve yet to have a follow up with my doctor as work has been full on lately.

Still very much enjoying this break and not worrying about whether I’ll be pregnant or not for a while. It’s weird but I’m happy I’m in this mental state.

Sorry you’ve been poorly, hope you’re on the mend. Very excited for you re your birthday plans! Xx

Gentle congrats @elarcoiris xx

I really need to read up to see how everyone else is doing. Lots of love to all in the meantime xxx

Hi everyone, I got a very faint positive on a cheapie (4 times as yes I did 4 tests in one day)... I'm 12dpo though so I'm not feeling optimistic, as seems quite late to get a really light positive and I'm so crampy. Anyway, I chugged back the pred this morning and have started on cyclogest. Going for an Intralipid tomorrow and I'm also on aspirin and hydroxychloroquine 400mg. Can't say I'm happy, which sounds awful, but we've just started all our ivf tests and my hubby's sperm didn't come back good - so I'm now thinking this one is doomed right from the start, if it even progresses at all. Hubby doesn't understand my pessimistic outlook but I'm not sure I can do another loss, and over the summer too when we actually have a lovely holiday booked for once! Sorry for the offload. I'm not in a great place. I've been desperate for a positive for almost two years since my last loss but now I'm just bricking it on all fronts. I'm also in 100mg Sertraline which I really don't want to come off, as I've only just started to feel a bit better mental health and anxiety wise.

Hope everyone else is doing okay? Xx

@HopefulH I had a very similar experience. Almost stopped taking the drugs when I tested negative on 10dpo but then got a suuuuuper faint positive on day 11 and stayed really faint for a good few days so was convinced it wasn’t going to go anywhere. I’m now six weeks and have done a couple of tests recently that now have a super dark line/dye stealer. It’s still early days for me but just wanted to say that faint lines at the start doesn’t necessarily mean bad news. Will keep fingers crossed for you xxx

Thanks @elarcoiris I hope everything is progressing okay for you. Can I ask just how light your tests were at first? My test today was marginally darker but it's still crazy faint. Feeling all over the place hoping it's either a chemical or that it progresses okay, but please not another missed miscarriage!

@HopefulH It was incredibly faint. I have a hidden folder on my phone with all of the tests I’ve taken (slightly unhinged behaviour over here but it’s making me feel slightly more in control of the whole situation 🙃) and when I look back to the start I’m actually surprised I even registered it as a positive at the time. The first week or so they stayed pretty faint but were getting slightly darker every couple of days at least but then started to get quite a bit darker in the second week and had tentative good news at a scan at CRP last week.

I’m very much not advocating for the crazy level of testing that I have been doing, but just trying to provide some level of reassurance that faint lines doesn’t necessarily mean bad news. Sending lots of love your way - it’s all such a rollercoaster. Xxx

Hi all, sorry to butt in this thread but I am wondering if anyone was taking 5000 iu per day or more than that per day of vitimin D. I was reading It starts with an egg and read that those with immune issues need at least this amount to keep the immune system working properly, etc, etc.

@Carportforme Yes I have been taking this dose since TTC. Dr S protocol recommends too and I fell pregnant first cycle trying while taking this and other immune medication. Currently 30 weeks x

Thank you so much for responding. Bit of a long story on my part but I was found to have very low vitimin D after an MMC last year and out on 4000 iu per day. I also tested positive for antinuclear antibodies. I am celiac (under full control) so I do have to watch my nutritional intake carefully. Recently I had a chemical pregnancy and my bloods were taken again after. No trace of the ANA apparently and the vitimin D measured within range and sufficient. I am just not certain how sufficient sufficient actually is, if you get my meaning. I havent yet been diagnosed with a specific immune issue that relates to my losses so I may just have been unlucky so until if and when I have a third loss I am unlikely to find out. I just think the extra Vit D might be worth asking doc about.

@elarcoiris I'm displaying exactly the same unhinged behaviour of obsessing and testing over and over. I'm not sure things are progressing okay 😔 Do you have a photograph of your light tests? It's my fourth morning of testing positive and I feel like normally my tests would have darkened quicker than they are for this one - not that that meant anything good in the past as they were all losses ultimately! I'm just so on edge this is a chemical. I also have brown spotting now and cramping yesterday. I'm due on my period tomorrow... Am I going mad. I think todays test is very very slightly darker than yesterdays?

@HopefulH Here’s a screenshot which shows all the tests I took from 11-23dpo (if I’m counting correctly). You can see they were suuuper faint for the first week or so but getting slightly darker every couple of days and then started to increase more significantly.

Will caveat by saying it’s still early days for me, but so far so good.

@HopefulH I think that progression looks darker today for sure. Is there anything else that's making you worry?

@elarcoiris gentle congrats on your scan last week. When's your next one? How are you feeling? Sorry for not messaging sooner, I've been away having a lovely break from it all...

...Or so I thought. Totally messed up. Got told on maybe CD10 not to try this month as I needed to repeat my Humira injections. We'd had sex once by that point on CD8 maybe? Anyway thought I was fine because I ovulate on CD13-14, but felt very sick on holiday, got home last night and took a test, and then another one this morning and they're definitely positive. Clearly I ovulated early but I had stopped testing when we got told not to try so I have no idea how many DPO I am. I also haven't been taking prednisolone, progesterone, GCSF or intralipids, and I haven't even done my second Humira injection. Panic took my pred this morning and my GCSF last night but a bit worried about not having been on the full protocol... what a bloody fool after so many losses to have gotten accidentally pregnant. Can't help but hope this might be the one, but it's unlikely

@lozzmax Oh wow, what a surprise! Gentle congratulations! Totally understand it all being a bit panic inducing when you thought you were out for this month, but keeping fingers crossed for you. What have the doctors said?

I’m ok - have my next scan on Friday and a combination of nausea creeping in and spotting stopping has allowed a teeny tiny bit of hope that this might actually happen. Still trying to manage expectations because after 5 losses, hard to believe we could be as lucky as for it to work out first time. But maybe…?

@elarcoiris thank you - I think my lines look similar to yours except I got a negative 11dpo and positives started from 12dpo...

@lozzmax gentle congrats to you! Your tests look strong. I think I'm worrying because I was really crampy yesterday and started brown spotting, which is still there this morning and I just would expect a quicker increase in hcg levels based on my other pregnancies which seemed to show stronger lines quicker. I'm just super anxious to hope.