Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

Sorry to hear this @VenusStarr and @Zest11 its such a rollercoaster. I hope you are both looking after yourselves.

@comingsoon786110 I have heard of these but never had them and I’ve never read of anyone finding anything from them either (so far)

Thank you @Ems123456789 and @comingsoon786110 ❤️ I'm ok, just fed up.

I had the Emma and Alice with the ERA test. I did it through crp though and did it as a mock FET cycle.
I think Professor Quenby used to do the cerm trial on the nhs but heard that's finished now. That one looked at inflammation associated with chronic endometrisis but don't know if they also looked at the microbiome.

I'm not aware of any other nhs clinics that do it.

@VenusStarr I'm sorry. It's so crappy. I know the fed up feeling. We try every month in between IVF cycles and it's like yawn another bfn. Are you going to go to Zumba tonight? May I ask...how did you get pregnant with your losses in the past? Were they natural pregnancies or IVF? Could it be worth doing IVF with high stimms?

I know @Zest11 it's quite boring now!
I did legs bums and tums tonight, zumba tomorrow 🙂

Honestly, I have no idea how we managed our natural pregnancies. The first one was no different to any other month. I was super stressed as we'd started our fertility tests with the gp and he dragged his feet on sending the referral. The second I'd had a hsg and we did sperm meets egg (that one I just knew it would work). Third was the month after a hysteroscopy and I had a polyp removed. 4th was the second cycle using cyclogest from 7dpo. We'd actually had our baseline ivf scan and she said you've got 2 big follicles, we'd not been trying / had sex leading up but just decided on a whim and bam.

The final 2 were ivf. I'm a bit scared to try high dose stims with my low amh. My afc is only about 8. First cycle we got 7 eggs (from 2-3 on the scan) but only 3 fertilised. All 3 made it to AA blastocysts. Second time I used a lower dose stim as it was just for my lining but they encouraged me to do a collection as we had 4 follicles. I lost 1 follicle before collection as I ovulated before the trigger so got 3 eggs, 3 fertilised but one abnormally. Day 3 one was looking very good, the other a bit fragmented. Day 5 only one morula, the other was still going but very slowly. Our last frozen embryo degenerated after the thaw 😕 transferred that and the morula and nothing happened.

I do think we'll plan an ivf round but maybe later this year. But I'm 40 in August. I was 37 on my first round. So not feeling that hopeful 😐

@VenusStarr It sounds relentless. To have your hopes raised that many times. And have good quality embryos too. I don't think I had realised you had got pregnant naturally a few times and there really doesn't seem to be anything in common with the pregnancies. I wish we had answers for each other.

Thank you @Zest11 me too ❤️❤️

I've just had a massive nosebleed. Not had one like that for years. I used to suffer when I was little but they cauterised it. So random. Feel a bit sick and lightheaded now. Got a really full on day and feel very rundown.
Hope everyone has a good day xx

@Zest11 I am so so sorry!! It really is rubbish when you do everything by the book and it all looks perfect. Have you got a follow up booked with the clinic and dr s? I really wish we all had some answers. 4 failed transfers over here too with just a chemical to show for it, I just don't understand why these things happen. I really hope you're taking care of yourself xx

@VenusStarr I'm so sorry it wasn't your month too, and now you're not feeling too well either. It's just one thing after another all the time isn't it, are you still on aspirin? Do you think the nose bleed is due to that? Hopefully you're able to get your hyfosy in the next few weeks? Reading your history is just so unfair :( you really deserve some good news this year ♥️

@comingsoon786110 I've been taking the pred first thing, i don't normally eat breakfast early but have been forcing myself to, just so I can take the pred as early as possible so that it doesn't interfere with my sleep. Saying that the last two nights I have actually slept really well, and my bloating has gone since yesterday which worries me slightly.

No updates from me again, i'm 10 days past trigger, 8 dpo still have a faint line on strips so trigger is still leaving my system as its fainter than yesterday. I'm feeling shitty these last two days and just know it hasn't worked, was meant to have a day out to take my mind off it all today but sat here in my blanket feeling sorry for myself instead lol.

We need some positive stories asap! xx

Hi All,

I’ve stayed off here for a while because I didn’t want to trigger anyone with some good news when I know a lot of you are having a tough time but I now could really use some advice…

…so baby is actually fine (as of last scan on Monday). After the bleed I had, turns out I just had some blood in my womb. My fertility clinic have said I can go back to a lower dose of clexane (20mg) but I’m worried this may cause bleeding again. I’m almost 10 weeks & so I’m also worried about placenta issues in second trimester if I don’t go back on clexane soon. I just don’t know what to do for the best & was wondering if anyone else has had a similar experience?

So pleased to hear all is well after your worries @InvisibleDreamer

Just had my third full on nosebleed of the day 🤦🏻‍♀️ luckily we'd just broken for lunch on the training I'm delivering. I was stuck in the toilet with my knickers round my ankles! Omg. Maybe it is the aspirin. So weird.

Thank you @star2022 ❤️❤️ I'm sorry you've still got a line, so frustrating. Sometimes we need duvet days!

My husband has his op date, 7 June. So can hopefully get my hyfosy in next week or early the week after and it won't impact. I did debate briefly just doing superovulation but caught myself. Still think I need the break. Xx

@InvisibleDreamer so happy baby is fine but sorry dont have any helpful advice for you on the other issue 😢

@VenusStarr the nose bleeds seem so strange. Maybe stop aspirin for a while until after your period and then resume again? Is this something that normally happens to you? So glad DH got a date so you will be able to schedule your procedure now! I'm hoping this is the issue for you (in a good way lol) and that you will have success after this!!

I'm just in a rotten mood and have been for a few weeks now. Birthday is on the 31st and don't think hubby is planning anything. We have been in an argument for 10 days and haven't spoken. Its depressing me as if I didn't have enough to deal with. Feel like i have nobody to turn to. We deal with things in very different ways. He's been going out a lot. Coming home 2am some days. I could break down at any point i'm pretty sure.

No, never get nosebleeds, tmi but they were literally dripping out @comingsoon786110 I've not taken aspirin today. I felt quite unwell this evening but I don't know if its a combination of tiredness and pre-af. Dh said maybe it was my blood pressure as i did have a weird headache too. Just feel very run down.

I'm sorry you and your dh are still not speaking ❤️ that's really hard. Could you make a plan for what you'd like to do for your birthday? I hope you're OK, feeling on the brink is horrible, can try and think of things that give you a lift or you enjoy doing, to give you something to focus on and look forward to. Sending love xx

How is everyone? I hope all well. This is the quietest I have seen the forum in a while so i just wanted to check up on everyone 😌

Update from me is that I was taking HCQ since early November and stopped at the end of April and I have really started to see the hair fall out that everyone was talking about being a side effect. Literally if I brush it its coming out so much and even in the shower.

It feels good not to be ttc, even DH seems so relaxed which is nice.

@VenusStarr did AF show?

Hey @comingsoon786110 it is quiet on here at the moment. Good to hear you're feeling relaxed about your break. Sorry about your hair though 😕 did you say its your birthday soon?

No signs of af 🧐 I'm 14dpo today, I'm pretty sure she'll be here tomorrow, which is good timing for the hyfosy as next week is so busy at work and 2 of my team are off sick so hoping I can go on the following Tuesday. Was panicking it would come yesterday and we'd have to postpone. Been to zumba this morning and going to have a nice glass of wine tonight.

How is everyone? @star2022 @Zest11 @Danni8 ❤️

@InvisibleDreamer thank you for the update, that's really good everything's going well so far! 10 weeks already...wow! 1/4 of the way there!

@VenusStarr what a relief your period held off and is playing ball for your hyfosy. I really hope it gives you a good clear out and you get a bfp shortly afterwards.

@star2022 I hope you're feeling okay. How many do are you?

@comingsoon786110 I'm glad things are calmer for you. Taking a break is often a good thing and does us so much better.

I'm okay...I'm not really sure what to think about things. I keep over analysing so I think a break is probably for the best for me for now xx

Hi all! Sorry I’ve been so quiet, been very busy at work recently. I had my results appointment with Dr S and turns out I’ve got high levels of NK cells, highly activated NK cells and elevated IFN-gamma. I’ve got Humira for the IFN gamma (just did my first injection) and then will be on pred and intralipids plus all the supplements etc. I don’t feel super optimistic because I know from this thread (sadly) that Dr S’s plan is not necessarily a magic fix. But I am happy that something was discovered and have more hope than I had before. Will start TTC again in July, and it’s so nice to have a break in the meantime. Hope you’re all doing well and enjoying the summery weather at last! xx

Ps @InvisibleDreamer that is amazing, so happy for you!

Hi @Lily1990 I hope you're feeling OK after your results, I'm pleased you do have some answers and a plan. Taking some time out is good too. I genuinely think my experience is not typical, most people I know who've seen Dr S have had success. It is hard to feel hopeful, I think its often a protective mechanism ❤️

Pink spotting this morning, so hopefully af will be here at some point today. So I'll contact crp tomorrow to book in for the hyfosy.

Hi everyone hope you're all well thought I'd update as I've been in limbo with my trigger. I tested on friday which was 10dpo and could see a faint line (like last time) and knew I was out as it was the same faintness as my first SO cycle where my trigger lingered. Nurses at crp told me to continue meds and to retest today at 12dpo - I didn't continue them as I have been here so many times before and I just knew in my heart it hadn't worked. I tested today and the line was still there but fainter 😔 so i'm glad I stopped meds when I did, just waiting for AF to arrive now so I can try again.

Really had high hopes for this month, having had a polyp removed and it being my first month of steroids but looks like it wasn't meant to be. To top it off, I went for a swim this morning and saw nothing but parents and babies 😒

@comingsoon786110 I also have had sooo much hair loss after taking hydroxy! I'm glad to be off those now. Hope you enjoy the break!

@VenusStarr Did you ever find out what happened with your nose bleed and why it happened? Fingers crossed you can get your hyfosy booked in and it sounds like AF is on its way! Hopefully mine comes tomorrow, I checked my last cycle and I came on after 2 days of stopping meds so I should be due either tonight or tomorrow.

@Zest11 How are you doing? Are you taking a break before going for a FET? Have you had your followup yet? I sometimes wonder whether I need to go back to IVF, it's so hard not knowing what to do..

@Lily1990 good luck its always nice when you have a plan in place!

I'm sorry this cycle hasn't worked @star2022 we might be in sync again! Are you doing superovulation again this month? I'm aiming to go to crp for next Tuesday... Will let you know.
I think I'm more resigned to going back to ivf again but think it'll be our last shot and don't feel ready yet.

No idea about the nosebleeds,I have had a bit of a cold so may be related to that. It was just on Wednesday but I did feel faint and headachey each time.

@star2022 I'm really sorry it hasn't worked this month. It's so frustrating. And I can understand the high hopes too - it did sound like everything was going in the right direction for you. It is hard knowing what the right thing to do is. I don't know if IVF is the right answer - I thought it was as that's the only thing that worked ever but now it's not so Idk. My thinking was that at least I would know the egg and sperm had fertilised!

I'm not sure what to think about things tbh. I sort of feel like calling it quits and giving up on everything completely. I feel I should give my remaining embryos to a lady whose body won't dissolve them but I know I would never really do that. My head's all over the place. A couple of months ago I tried just steroids and pred, nothing else...and I got a really insanely faint second line at around 9-11dpo on a frer. But so so faint I wasn't sure if they were evap lines. And then I tested at 13dpo on a different brand and something showed up but between 10-20mins. And at the time I brushed it off but I felt all the familiar twinges of implantation cramping a few days after ovulation and I do think something tried to happen. I've kept the frer tests and there's def something there (I have a 1 line test to compare it to!) But I also know it's so irrelevant because it didn't achieve anything anyway. Yawn.

Hi all. I'm watching all your stories unfold with so much interest and sympathy especially having gone through all the old "pred threads" and seeing what a slooow rollercoaster it's been.

I'm on my 4th FET (first time with the Dr S immune stuff on top - pred, intralipids, fragmin). Alas I have done two tests that were negative already, on 5dp5dt and 6dp5dt. Too soon I know but also soon enough for plenty of others who get positives. What a bummer. I think all thats left for me is to do a final FET and throw the kitchen sink at it (ie the most immunology stuff allowed).

I do have a question though (which might be bonkers) - I wondered if it's possible that implantation goes ok but the problem is with the human growth hormone or lack of it. I've read that hormone begins at 7dp5dt - are there any solutions if you're body isn't good at producing it? I can't see that anyone offers an artificial replacement?

It's so hard @Zest11 ❤️ it can feel very overwhelming at times. I do think that trying to give yourself some headspace can help just ease some of that pressure. I can relate to the feeling of just stopping it all. I'm not there yet, but definitely closer to the end and I think having a break from treatment and trying has helped me come to terms with that.

@nottsgdns I hope it's just a bit early to test. It's hard not to compare to others and you just get consumed in ivf treatment. Sending love.
It's not a bonkers question but I don't know the answer! I know some people have had hgh during stims but I don't think it's that common and not heard of its use after transfer.

Currently having a very light period. Unsure if yesterday or today is day 1, but crp have offered me Friday for the hyfosy, just waiting to hear what time... had to cancel some work stuff but I'd rather do that than postpone. Half dreading it, half hoping it might be the boost we need 🙏

@nottsgdns Ahhh no, I'm sorry. It's rubbish following the plan and it not working. How are things now? Hopefully it was too early!

@VenusStarr good luck for your hyfosy! It Def won't do any harm and can give a good clear out!

Thank you @Zest11 🙏 they asked if I wanted intralipids as well but dh is quite ill again this week (his op can't come soon enough) so said no.
I checked traffic this morning and I'm going to have to set off just before 6.30am on Friday 👍 hope its all worth it.

Hope you're OK ❤️