Immune/NK cells pred thread #31

Hi everyone hope you're all okay on this gloomy day.

@comingsoon786110 just wanted to say good luck for today, hope you manage to get a first response. Thinking of you!

@RJayne Sorry to hear about your history and what you're going through, sorry I don't have any experience of any of it but just wanted to wish you well with whatever you decide. I know what you mean when you say you just wish you had a magic wand! Like @Lily1990 has said, there are still tests beyond what dr s does, like looking to see if there's a DQ match is something i've seen crop up a bit.

@Zest11 Glad my message helped! That's the only way I reason with it, we're already spending so much money, what's another few hundred 🥴

@VenusStarr Will you be testing today? What dpo are you? Good luck if you are, and sorry you're feeling rough! I really really hope these symptoms mean something for you. Have you had these kinds of symptoms in the past? I have a fertility anklet just like your bracelet and I misplaced it once and I was panicking so much so I know how you feel. Try not to read into it too much, hope you get some good news soon x

No AF still for me, but it really feels like its coming. Woke up so sweaty today and have that heavy feeling down below. I was also feeling super low yesterday and just down about everything. I have too many people around me who have newborns and i'm constantly battling between going to see them but also protecting my mental health. And today I have the start of a sore throat. Quite pleased about that though as its my first ''illness'' in like 3 years so the meds must be doing something!

@Lily1990 Thank you for responding.
I’ll take a look in to Dr Gorgy and see what our options could be. If only someone had a magic wand who could tell us when our time would be and what to do!

Thanks for the blog too, will take a read.

@RJayne Just done some more searching and this blog was from someone who apparently had 2 losses on Dr S’s plan and the 3rd was a success https://trytryagainblog.wordpress.com/

A bit late in replying but thank you @star2022 and @VenusStarr for your responses and comments about the sperm DNA frag test - definitely motivated us to get it, and @star2022 I completely get your slight relief feeling that it's not all on you. Obviously I hope my DP doesn't have very fragmented sperm but at the same time it would be nice if it wasn't all due to problems with me!
@RJayne I'm so so sorry about your loss, that must be so hard. I know someone (on Instagram) who had a loss with Dr S and then went to Dr Gorgy who ran more tests and they found other issues (e.g., leukocyte antibody detection issues). Then after changing up the meds to address those issues, she has had a baby. So in her case, it helped to run a wider range of tests than those offered by Dr S.

@VenusStarr Thank you for responding! Our pregnancies were also from IVF and my most recent sounds very similar to yours. We had 3 positive scans in total, showing growth & a strong heartbeat, but during our 9 week reassurance scan at the EPU, they couldn’t find a heartbeat. No symptoms or signs of miscarriage just those devastating words in the scan room!

I guess I’m just concerned about how much further we should go with Dr S or if we’re reaching the end of what he can offer / will work. The unknown is so hard!

I’ve seen the GCSF injections on the plan so I’ll take a little look in to them as I’m guessing that’s what he’ll offer us next.

@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.

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!

@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!

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

@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.

@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.

@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!

@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.

I meant to say progesterone not pred!

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.

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.