Immune/NK issues - aka Pred Thread no. 21!

[Tee4me]

Roll call for all moony faces!! 🌝🌝🌝

Waiting for our rainbows 🌈❤️💛💚💙💜

Tee4me
Age: 34
TTC DC#2 since December 2015
x2 MCs (second was 'missed')
DS turns 5 this month 😱
Seeing Dr Shehata - diagnosed with Hypothyroidism and aggressive NK cells
Currently on cycle 2 of Pred and week 6 of Thyroxine
CD10, expecting to ovulate at the end of the week 🤞🏻🤞🏻🤞🏻

Hello all - Has anyone been prescribed with G-CSF by Mr.S as a third level after failing on pred and hydroxy?
The nurse has emailed me that they can prescribe G-CSF along with hydroxychloroquine given my history of recurrent miscarriages..
Its a very expensive injection and has more side effects too.. i am looking for someone who has taken it and made to a successful pregnancy!

@Megan234 - mine were almost same as u.. NHS nk tests came out normal but tests with Mr.S showed borderline and aggressive nk cells.

@zarala I had the tests done at the Epsom Hospital where mr S works. What’s uterine scratch? How you finding St Mary’s? My appointment was cancelled because I was pregnant not sure if I should rebook it

@megan234 I dont know what I think about St Mary's really.
They have essentially told me they dont think there is anything wrong with me, and I have had bad luck 3x. The consultant laughed when I mentioned dr s and said intralipids are just ridiculous.

they want me to have a camera in my womb to check for scar tissue as I have had 2 ERPCs. and they said while they are doing that they can take a biopsy of my uterus lining to check for natural killer cells.

The consultant I saw said that they dont believe in Dr S methods of checking for NK cells in the blood and the only acceptable way is by checking the NK cells in the uterus lining - so thats what the uterine scratch is for.

I am REALLY hoping I fall pregnant before my scheduled hysteroscopy in September because it sounds uncomfortable and then they want me to wait 6-8 weeks after it before TTC as that's how long it will take for them to give me my results!!!

SO basically - I've found St Marys mind numbingly slow and really not all that helpful at all - which is why I am putting all my faith in Dr S

@zarala Interesting, a friend of mine wasn’t impressed with St Mary’s as well. I asked Mr S about biopsy of the uterus on my first visit to check for NK cells and his answer was that they use to use that method long time ago and is not reliable because the NK cells level changes throughout your cycle. Everywhere in the world they believe in NK cells but our NHS don’t.

I think we’ve done the right thing seeing Mr S, I think he will try anything to help us, that’s why he is so popular.
I have a professor in obstetrics reviewing my results in couple of weeks let’s see what he thinks about NK cells.

@Megan234 I totally agree!
I have put all my faith in him!

We will get our babies soon!

Baby dust to all!!! ✨

@zarala good luck for Friday! I look forward to hearing. @megan234 I think I’m a day behind you. I will prob test on fri 24th/ sat 25th. Is this your first cycle? Sorry you have probably said but I’ve lost track.

@DaniMERL it’s my first cycle on Hydroxychloroquine, I had a chemical pregnancy in June and I wasn’t allowed to try unti the tables were in my system for 6 weeks.
@zarala I have spoken with the nurse regarding the Intralipids and as soon we have BFP we have to call the clinic and they will book us in within 72hrs for Intralipids.

@zarala any news?

Omg yes
I took a frer yesterday and it was positive!!!!
I called dr s office and they told me to come in that day- so made a mad dash to Epsom and had my first intralipids IV.
My first scan is in week 7 which is in about 3.5 weeks... so have to just wait now!
So nervous and anxious but tying to stay positive

@zarala congratulations great news, stay positive x

@zarala congratulations such a great news.
can understand ur anxiousness, have been ther!! be positive

@zarala amazing news!!
Can I ask, did you have any symptoms? I noted on the medication info sheets that the pred can mask them so intrigued to know.
I’m only in 4dpo but not feeling v hopeful.
I didn’t realise you’d have to go for the IV so fast.
Keeping everything crossed for you, keep us posted x

Thanks guys
Still doesn't feel real yet. AF is due on Tuesday so just want to get past that first milestone...

@DaniMERL I did have a little nausea the day before and found I was really tired the night before I tested but nothing major...I tend to get a little nausea in the run up to AF so I didn't suspect any different
But I am definitely feeling tired - I just don't know if this is psychosomatic or real! Needed to have a nap this afternoon!

I'm having some strange camps in my lower abdomen though which I don't recall feeling in any of my other pregnancies so I'm hoping it's a good sign and not an omen of impending doom! 🤞🏽🙏🏽

Hi @zarala how are you doing?
I tested this morning (11dpo) before taking any medication and it was a definite negative. Feeling stupidly disappointed even though it’s only the first month. The days just dragged waiting to take the medication and then the last 10 days waiting to test etc. It usually takes us 2-3 months to conceive so I shouldn’t be surprised but it’s still hard.

@DaniMERL ah I'm sorry to hear that
It is always disappointing- I was even disappointed the month we weren't officially trying 🙄 eugh silly brain
I'm doing ok...kind of living in denial a bit- trying not to get too excited or anxious

Dr s will scan me at 7 weeks but the RMC will scan at 6 weeks. I haven't told the RMC yet because I an appointment there on Tuesday and the professor Raj Rai was so weird. i tried to tell him I was pregnant but he just said no! No. I just don't think he was listening or cared and was more concerned that I shouldn't take anything because my nhs results came back all clear. He wouldn't even give me aspirin or progesterone...
Anyway I am going to tell them on Tuesday so I can get a scan the following week-

Ah sorry for long rant! I was just so shocked at how bad this eminent professor was! He didn't want to hear that I may already be pregnant 🙄

@zarala well that sounds weird! We also have an appointment with our usual consultant on weds and are getting cytogenetic results from 4th miscarriage back then I think.
When have your losses previously happened? I try the denial thing all the time but it doesn’t work at all!
Oh well, there’s always next month for me. So tedious!

Hi all
Just wondering how everyone is doing?

Any ladies on here with experience of taking pred while pregnant- did you find yourself catching colds easier? I never get ill normally but I've come down with a cough/cold these past couple of days and I'm wondering whether it's from the pred eroding my immune system?

I'm 6 weeks on Monday - nhs RMC will scan me next week and dr s after 7 weeks... I'm just hoping I get through these next few weeks /9 months with a healthy baby ! I'm so anxious! Can't get excited about this pregnancy yet because who knows what the outcome will be!

@zarala I know exactly how you feel, I’m 5 weeks today and too anxious to be happy. I’ve been doing pregnancy tests every couple of days just to make sure that I’m still pregnant. The last 2 CP ended before 5 weeks, it’s sad that we can’t enjoy this time and living in constant fear.
Mr S will scan me at 7+4 days and I will book another scan with RMC for around 6 weeks. Do you have any pregnancy symptoms? x

@Megan234 omg congratulations!!!!! So happy to hear this!!! Were only 6 days apart!!! How coool!!!

I don't really have any symptoms- except I have been really tired and sleeping as much as I can. And sometimes get pangs of nausea but very short lived. I am peeing a lot more and I am more thirsty too- but nothing really major- how about you?

My first lost was at 5w6days which is where I am today- so I'm hoping to get through today without any incident!

Stay in touch- it's great to have someone going through the same thing

@Megan234 also which RMC are you at?
My first scan is on Wednesday- it can't come fast enough!

I don’t have many symptoms as well, sore boobs, some cramping but not very often, I had some nausea last week but nothing now and yes peeing a lot which is quite annoying. I’m with the RMC at the Epsom hospital.
I’m trying not thinking far ahead only about my next milestone.
Good luck on Wednesday🤞

Hi all,
After 3 rounds of failed IVF, 2 fresh and 1 frozen, I conceived naturally, but sadly had a mc at 10 weeks back in May.
I have now been referred to Dr S by my GP. Next available app in November. Such a long wait!
Is there different treatment if you see him privately?
Do they do NK cell test on the NHS?

@zarala how are you? Did you get your scan done today?

Hey @Megan234 my scan is tomorrow morning! Really nervous and anxious but hopeful it will be ok. When's your test? How are you? I've been feeling quite anxious and wondering if the pred is impacting me. As I've been quite down as well- I contacted dr s and they told me to wean myself off it! But I'm scared to- so decided to stay on and see if it gets any worse I'll start weaning off....

@tomekan I'm sorry you find yourself here
I am not sure what dr s tests for on nhs - I think he tests for nk cells but I don't think he offered intralipids- but I may be wrong? Sorry can't be more helpful!

@zarala Good luck today, let me know how it goes. I think the pred is making you feel anxious, it’s one of the side effects. I do mindfulness and it helps me deal with my worries, try Headspace app.
I had some cramping and spotting on Sunday evening and I panicked. I called the EPU on Monday and they said it could be implantation bleeding.
After speaking with the RMC and EPU they advised me to have my scan done at 7 weeks, because if I do it earlier and there is no heart beat I will worry even more. I have my scan booked in for the 17th Sep and then another one with Mr S 4 days later.