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!

@VenusStarr I know what you mean with the dates, it didn't really add up for me testing on 12dpt as trigger was still in my system so I was in limbo for a few days and I think I waited until 14dpt when it just didn't get darker so I stopped my meds at that point. It really is so confusing with a trigger, I guess next time I'm going to just test it out completely and test early to see if it gets lighter/darker so that i'm not longing out my cycle unnecessarily.

Dh dna sperm was 10.8% I think so it was only JUST out of the range of normal so i'm hoping we do get to do a retest. As the days gone on I do feel like AF is trying to appear so fingers crossed it starts asap!

@Lily1990 ahh yes they do retest if beyond the 3 months which is super frustrating I know as the same thing happened to me with a few of them. Don't worry if you couldn't get dh to do the dna test today, the same thing happened with us and we just booked it in for the day we got the results back but i think we had to do an extra trek to epsom to do the dna sperm and had the results at harley st so it was a bit of a hectic day!

I found the DNA sperm frag helpful, mainly because i just kept feeling like everything was my fault, so in a selfish way it was kinda refreshing knowing dh had possible issues contributing and if anything it helped us both get into healthier habits i.e stop drinking (we don't much anyway but we've stopped completely), eating healthier, exercise etc. So its helped for more peace of mind if anything and possible cause of our failed ivfs. Hope you get some answers x

No idea what's happened, more than half my message hasn't posted!! 🤦🏻‍♀️

@Lily1990sorry it was stressful yesterday. We only got dh's sperm dna fragmentation done last year (after 2 years under the clinic). I'm glad we've had it checked now, dhs was above average so he's on impryl now. We also found out he had ureaplasma (abd subsequently so did I), so we both took Doxycycline in February.
I hope these next few weeks pass quickly for you. It is a lot to take on with all the bloods etc and the cost is a lot but hopefully worth it for finding out what has been going on and hopefully a treatment plan for you ❤️

Hi again @harrietm87he's using 25mg pred, I think if you get covid while taking it, you just drop down to 15mg. Hope you're well.

Sorry that's all weird. @star2022 some of that was for you!
Hoping af is on her way for you 🙏

I've asked them to remove the first post as it makes no sense! So just reposting this bit: 8dpt today, so doing gcsf tonight. My temp is still high this morning. Still really thirsty on the pred and having weird dreams. Putting everything down to the meds. Hope you're getting on OK @comingsoon786110 xx

@VenusStarr had my first vivid dream last night for the few hours I fell asleep but I think it's because I was anticipating it. I had insomnia after that and have been up since about 3am. Still have a crampy lower back but I'm just nervous to test. I felt like I had symptoms last month as well and it was a BFN. I almost don't want to know!

The thing is at this point at this point I'm terrified either way. St Mary's have asked me to contact them as soon as I get a positive so they can prescribe me with heparin injections. Just more sharp needles and meds to add to the list. I don't know how much more my body can take.

Good luck for your shot today! What time of day do you usually do yours and does it matter? How has the TWW been for you?

How is everyone else getting on? Hoping the weather gets warmer soon so we have something to look forward to! 😇😇

Sorry about the insomnia @comingsoon786110 it's so hard not to overanalyse everything isn't it? Definitely understand that feeling of not wanting to know. Is your test day Friday?
It is overwhelming thinking of everything you'll need to do if it's positive. And the daily injections are hard, but you can do it ❤️

I don't think the timing matters for the injection. But I'm going to do it about 8pm I think. X

@VenusStarr yes test day is Friday and I am super busy at work so time will pass I'm sure!

I'm such a shopaholic as it is and I just need an excuse to shop so I've done a massive Next baby clothes order to have something to look forward to. Probably will end up returning them all as soon as I see my statement 😂😂.

Do you think I should tell Dr S that I'm also going to be taking heparin or shall I leave that info out?

I feel like this week has flown already @comingsoon786110 !
I'd probably mention it to him. Just in case. If it helps your anxiety to take it as well as the other stuff then that is a good reason.

My mouth is so dry! Got to leaf a group this afternoon abd I'm really conscious of it. My anxiety has peaked today as well, so feeling pretty horrible x

Thanks so much @VenusStarr. And does tapering start at 10 weeks or 12?

Considering whether to attempt another go, and my GP has unbelievably said he may prescribe the same protocol which would be amazing. I couldn’t do SO though which I kind of feel was needed last time so still weighing up whether to go back or not.

That would be great if your GP would support you @harrietm87 tapering starts at 12 weeks, so all finished by 16 weeks

Does anyone else experience bloating after finishing the letrozole? Today I'm so bloated and I haven't eaten anything different as I'm on an AIP. I feel a bit achey in my lower back and I'm wondering if this is my ovaries kicking in. But confused by the bloating.

I had a low LH test this morning which I was pleased about, as really hoping my follicles are not too big this time - appt is this Friday when I'll be on CD 9...

@comingsoon786110 Can I ask why you will be having the Heparin? I'm trying to get hold of blood thinners too as CHI is a potential cause of our losses and this is part of the protocol - however Dr S was against blood thinners for me. Hope you get good news Friday!

@VenusStarr Fingers crossed your symptoms mean something. I always have a vivid dream when I've been preggo - and last cycle I didn't have any on the pred so kinda knew I was out - so think it's a good sign if you are experiencing some signs. When is your test day? Last cycle I got a faint positive on my official test day which was still the trigger. It was so hard seeing it knowing it wasn't real.

I meant to say progesterone not pred!

Just thought @harrietm87 would your GP also prescribe letrozole? You could have a local monitoring scan? Not sure if GP would prescribe a trigger though?
Are your babies both superovulation?

@HopefulH I've been very bloated since ovulation, it's so uncomfortable. I don't think it started before though. But it might be your body growing those follicles. Did you do 10mg this time? Keeping everything crossed that your scan on Friday is good news and you've caught them at the right time 🙏

It worries me that I might get a false positive due to the trigger. Test day is Sunday 🫣 have only got easy at home ones so need to buy a frer. But not even tempted to test. I've asked dh if we can plan something nice for the day so I'm distracted either way. Otherwise I'll just mope or be incredibly anxious. Not looking forward to it.
I'm trying (and failing) not to overthink. Like I've got mild twinges and I'm thinking are they period cramps 😫 still really thirsty but that's got to be pred. I intended to go to the gym tonight but I've just driven home and I feel shattered so just going to have something nice to eat, chill and then do my gcsf injection later.

@VenusStarr I don’t think GP would as I ovulate on my own (although late in my cycle which I suspect causes issues) but I might raise it.

Both of mine were SO, on cycle 1 and cycle 3. I liked the control of knowing exactly when to start the pred as well.

@harrietm87 Did you have losses prior to your successful pregnancies? It's amazing the protocol has worked for you twice and with SO... gives me some hope!

@VenusStarr it's so hard not to overthink and the progesterone does not help! I have everything crossed for you this is your time. Planning something nice is a good idea. Will that be 12 days post trigger on Sunday? It's a bummer the trigger can still show up that late isn't it. I know for some it goes quickly but it was still showing for me very faint on 12 days past trigger but the following day it was a stark white result - so at least I wasn't in limbo for too long!

That's good to know @harrietm87 this is my 3rd superovulation - had a long break. My first 2 didn't really go to plan, but this one seems to (other than my thyroid being a bit raised).
Hopefully your GP is open to it 🤞

It's really horrible to have that happen @HopefulH 😪 it'll be 12 days past as I did it last Tuesday evening. I think I did ovulate that day, so hoping if it's worked it won't be an 'is it, isn't it' type thing.
I tested at 9 days in my first one and I still had a good line but nothing on test day. But the second time, after a really long cycle (didn't trigger til day 20/21) I did have a faint line but just put it down to excess trigger. My cycles are usually 24 days so that was a crappy one 🥺
Hoping we're all due some good news ❤️🍀

@HopefulH yes I had 3 losses before DC1. All pre-6 weeks.

Then I had an accidental pregnancy where I started the pred after I got the positive test and lost that one, which really confirmed to me that the protocol worked (so 4 losses in total).

Then successful again on the protocol with DC2.

I was 30 when I conceived DC1 and 33 with DC2. I have an under active thyroid but it’s always been very well-controlled. Diagnosed with high NK cells and prescribed the standard pred and progesterone protocol.

Wishing all of you on this thread the very best of luck. It is a hard and lonely time.

I've just dug out my results @Zest11 I haven't got good or bad either. But my results say that intralipids and prednisolone both should reduce killing by 80% so feel a bit rubbish that the protocol should have worked with my last miscarriage.
Have you got your breakdown?

@VenusStarr woah, reduction of 80%! That's insane...wow!! What did your %s go down to? The bit about "good response" was on the follow up letter rather than the results pages. I'm glad this week is flying past for you. It sounds like things are going okay with this SO. I keep thinking about you and really hope this is it for you.

I'm not sure what to make of things with my results though...apparently with the intralipids there was only a 10% reduction for one and something like 30% for the higher dose But with the pred doses it was nearly 50% on a dose of I think 10 so I'm not sure why I've been given 25n! So it makes me think...are the intralipids a waste of money in my case? Why would they be needed if the prednisolone works better? (I'll be having that anyway!) I do remember trying to ask Dr s and didn't really get an answer. I will try the nurses when I'm next in and see what they say...but saying that if it looks like our cycle will go ahead I will do them anyway so I know that I tried everything.

Sorry to hear you're feeling horrible today @VenusStarr I hate how these meds really affect my anxiety too not to mention the process itself! I still have my fingers crossed for you, your symptoms sound promising but i know the feeling of being too optimistic that you want to keep your barriers up too from getting hurt. Its such a difficult time waiting but glad the week is going fast for you ♥️

Good luck too @comingsoon786110 will be thinking of you on friday!

@harrietm87 Thank you for sharing your story, it also gives me so much hope! So nice to see success stories with SO in particular and not at the 4-6month mark either! It's definitely still worth asking your gp about letrozole, I ovulate on my own too but have been able to get it prescribed from my gp but only based on the paperwork CRP sent through to them.

@HopefulH yes i always get the bloating, thats how i know my follicles are growing so take it as a good sign! Good luck for your scan, my scans are also on CD9 and for my first SO cycle, I was ready to trigger on CD9. Keep us updated x

@Zest11 I've just pulled my results out again and mine show intralipids at the low dose only reduce nk cell by 4%! But higher dose it reduces by 33%. And prednisolone at 10mg/ml is 63% - @VenusStarr 80% is so good!! @Zest11 I remember dr s saying i'd be given the higher dose of intralipids so i'm guessing it will reduce by 33% and in terms of the 10mg/ml I don't think that means you only need 10mg, I think its just the units its measured in. I remember dr s specifically saying 10mg prednisolone wouldn't do anything so i'm guessing that's why its 25mg. Also, i've read intralipids help implantation, i know its alot of money and I have the exact same concerns as you, but the way I saw it (and reasoned with it) is that i'd always regret not having the intralipids if i had a failed cycle as I'd always wonder if that's why it failed. Does anyone know what the initial percentages mean before the ones that are reduction in killing?

No updates from me just yet, i'm on CD24 still waiting for AF. xx

@star2022 not too long to wait now. I'm afraid I don't know what the initial percentages mean. Thank you so much for explaining the rest though, the way you have makes total sense. I too have read that intralipids can help implantation but had forgotten until you said. And yes, what you say about the prednisolone makes total sense too, I have read a few people say that a lower dose is pointless. I think it does make sense to try pretty much everything if it has failed multiple times previously. And you're so right, I wouldn't want to think "what if" for anything. After all, we did go to Dr S because of his reputation...I need to have confidence in all of this! Thank you so much, you've definitely helped to make me see the reasoning behind it all!

Good morning everyone,

Thus is my first post on this thread but have been following for a while.

I’ve just suffered my second miscarriage while under Dr Shehata’s care (fourth in total) and just wanted to know if anyone else has had a similar experience? Or then been successful on their third, fourth attempt?

I’ve read of success stories but slowly losing hope this isn’t going to work for me / his protocol isn’t for me. I’m currently trying following a complex plan if pred, hydroxy, metformin, fragmin & intralipids and have also used humira injections.

Thank you in advance for any responses, support!

@HopefulH i was prescribed them from RMC at St Mary's via NHS. They said i needed a hysteroscopy and i refused and all my bloods came back normal. In my follow up Dr Raj Rai decided i was fine to continue trying but needed heparin injections from a positive pregnancy test because i have low fibrinolytic parameters which is a form of blood clotting disorder i think. Tbh im on another thread and the lady there mentioned that when St Mary's have no other tests to offer you they always end up putting patients on heparin. At this point i'm desperate to trying anything!

@star2022 thank you lovely 💖

@VenusStarr are you having any symptoms at all? I've hardly had anything. I also took a FR as I am 10 dpo but it was negative. Only after did i realise it wasn't an early response one but it was a rapid response one which is only effective if taken from the day of your missed period!

I'm feeling a bit low reading what everyone else's reduction in killing results are! Mine are low compared to everyone else and I am on so much medication. My reduction in killing with pred 10mg is 32% and with intralipid is 23%. Does this seem about right? To be honest up until now I'm not 100% i know how to read my results. How do you know what dose of intralipid you are on?

IVIG seems to have the highest reduction for me with 55% but i just cannot afford that in all honesty.