Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

You are very welcome. Realky not great that you and others feel obligated with these things. My consultant is actually very easy to talk to to be honest and I would feel happy to suggest anything to him to be honest. I would probably say they are a bit more laid back than CRP which some may not like but it suits me. They are aware of my pregnancy but they havent even asked to scan me. I have been scanned at EPU and maternity unit on NHS. They do want me back for another NK and cytokine assay before I start to reduce the steroids, which i will have to pay for but that's just the way of things. Thank you for your good wishes, that's really kind of you and I will keep everyone up to date xx

Well I failed to try and get out of intralipids 😅 He just said your NK cells are sky high and that was it, he has a way of not encouraging discussion! I'm not very good at confrontation though so I didn't bring up cost etc 🥺 I tried to get out of doing as many scans too but he said no to that. Btw do check at local pharmacy, I have found even with the £25 per item prescription, that it was cheaper to buy there than at CRP.
Hope everyone is doing ok, much love! 💕

Hi everyone, I know it’s been a while since I posted but it’s been one hell of a month for me. I did my 2nd SO cycle with gonal f and got a really good response (4 follicles) but the cycle failed. Not surprising because it’s been very stressful lately with my mum falling really ill with meningitis and being hospitalised and in a coma. I cried hysterically throughout the entire tww so didn’t expect a good outcome.

I’m wondering whether I should take a break for 2 months or so as it’s all been too much for me, or just take letrozole on my own and see what happens? I’m tempted to just take it easy as life has been hellish lately, but time isn’t on my side as I just turned 43.

Hope all is well @Gizmo1983 @Jecca88 @Deerdancer34 @Objectiontime and best of luck with all your journeys. Hope everyone else is ok xxx

Ooooh, bless you Deerdancer. I can only imagine that was a bit like being sent to a really strict teacher!! I must admit I always get my prescriptions from a pharmacy. I am being really nosy here although maybe I am just deeply interested in these things but I am interested to know what your NK cell results were, Completely understand if you would rather not say though. Xxx

@Newbeginnings22023 So sorry about the stressful time you have had. Hope your mum has made a good recovery. I would give yourself a month to reset and then continue. Enjoy a cycle free of worry and then recommence. Hope it goes well and thank you for your good luck wishes.

@Newbeginnings22023 I am so sorry to hear about your mum, how stressful for you. I hope she is ok? Maybe have a little rest so you can have time to feel better emotionally, as it all might be a bit too much with TTC as well. See how you feel 💕

@Objectiontime Ha! Strict teacher, you've totally got it! I don't mind sharing, which particular figures do you want, there are so many I don't really understand! My NK Cell Absolute count is 465.1 whereas it was 229 last time...quite a jump 😕

This doesn't surprise me in the slightest! Just wild when you think you are then asked to sign a form saying that you understand intralipids are not licensed for preganancy and there's no scientific evidence behind them 🙄.

Speaking of which, just back from my first infusion- took the nurse forever to find a vein which wasn't enjoyable but other than that no real side effects other than the sore arm someone mentioned, which is already feeling better.

I'm curious about the people saying they get there prescriptions from pharmacies....can you just take the CRP/other clinic prescription and walk into a Boots or a Lloyds and they should have it? Is there anything you can't get from an ordinary pharmacy?

Sending much love and luck to all and a big hug to anyone who needs one xx

@Deerdancer34Oh no 😭. I feel like I’d be scared to ask him! I can see him being a bit scary 😂. Good to hear about the cheaper prescriptions though! I’ll have a look into this because I need to cut this cost down in anyway possible! Xxx

@Fletchasketch 🤣 I know I thought that when I signed the form! Does annoy me I can't choose to turn something down...
Hope you put your feet up!
@Morgan236 He's just very good and not inviting further conversation. I wish I had challenged him on the cost to see what he said! And asked 'why' about having to do all the scans but I wasn't brave enough...yet we're paying!?

Yes so for prescriptions this is what I did:

• asked CRP for their updated price list
• went to my pharmacy and asked which of my meds they stocked and how much they were
• then can ask CRP to issue a prescription after doing some maths to see which was cheaper 😆

Just be aware that it's £25 per medication though - so £25 for steroids, £25 for Hydroxy, £25 for Cyclogest for example. Also it only works if they prescribe enough because I got stung with that once. Eg I got prescribed 6 boxes of steroids, so it was cheaper at pharmacy including the £25 prescription fee but once I was only prescribed 3 boxes, so it was cheaper to do it from CRP.
Hope that sort of makes sense!?

Ah yes your NK cell count is very high isnt it. Mine was 251. I dont really understand tte bit about activation markers to be honest but I have the figure 1.01 highlighted in my results and I think they like it to be below 1 so mine isnt too high. Not too sure though. When you say it was 229 last time, when did you last have it done? Did you have a loss or losses in between?

Thanks so much for your kind words @Deerdancer34 @Objectiontime. Sadly my mum’s still in a coma and no one can tell us how this is going to end, I just have a really bad feeling. But I agree that it’s best that I take a break from ttc and the protocols as it’s all too much for me right now. Hope you’re both ok xxx

@Newbeginnings22023 I'm so very sorry to hear that. That is such an awful situation for you and your family to be in. Sending you a hug xxx

Hi everyone! I've had a bit of an unintentional break from the thread but hoping everyone is okay :)

@Newbeginnings22023 I'm so sorry, that is so difficult. Thinking of you x

@Objectiontime @Deerdancer34 the numbers are strange aren't they. My total count was 389 which seems super high, my activation was 0.2 so I'm not sure how that works or what it really means.

@Jecca88 How are you? How did your baseline scan go? If you want to try just the sterioids etc, could you get your GP to refer you to St Helier for their recurrent MC scheme like me? I have everything bar the intralipids via NHS and it is cheaper. They're quite good about giving repeat prescriptions. I'm so glad you had a good break. The scattering of Archie's ashes sounds very cathartic, I hope it brought some peace but I'm sure you still miss him terribly.

@Gizmo1983 How did the stitch go? I hope it was okay and that you are too! And your migraines have disappeared?!

How is everyone else?

Not a huge amount to report from my side - I'm in the downreg stage of preparing for frozen transfer in Aug. My period was late (typical) which has delayed things by a couple of days but I'm trying to be zen about it...! I even did a pregnancy test when it was late which was so stupid and I knew it would be neg. Didn't realise how much I'd enjoyed NOT peeing on a stick haha.

Sending love to all xx

Hello @Hopeandfaith1990, firstly, doing the pregnancy test wasn't stupid it was a natural response that we would all have to a late period. Not long now till your transfer. Got everything crossed for you.
Yes, the number thing is very odd. I had an "iffy" cytokine ratio too but not entirely sure what that effects :)

Thank you! You’re right, it just felt like an unnecessarily triggering thing to do haha.

how are you getting on?

I get you there.
I'm doing okay. Awaiting the dreaded 12 week scan in a week . But the others have been okay so I'm hopeful. Not looking forward to weaning off the steroids as I know that much as I want to be iff them it will make me very nervous :)

Hi everyone, hope you’re keeping well. CD1 again for me today after feeling slightly hopeful this month.

my husband and I are interested in exporting IVF in Greece. We just want to hurry the process along but equally I’m so nervous
to pay that money and it not work 😢. Ladies that have been through this process where did you begin?

Hi ☺️ are you after general IVF advice or specific to abroad? I’ve no idea about going abroad but I can answer about general IVF to the point I’m up to (preparing for frozen embryo transfer atm)
If so, what did you want to know?
xxx

@Objectiontime Don't worry about weaning off the steroids, look forward to it!! My activation marker was 0.91 but this time 1.41! So I did the first lot of tests back in 2022 after my 3 miscarriages, I then had an ectopic pregnancy at Dr S but then did finally welcome my daughter. We are now thinking ahead to hopefully No.2... (btw I truly hope this isn't insensitive to anyone).
I would love to know what the numbers actually mean. I get that a large number of NK cells is bad but then surely @Hopeandfaith1990 your activation sounds really good because its low!? Btw definitely not a stupid thing to do, we would have all done the same...there's always that little bit of what if...

@Newbeginnings22023 Sending so much love to you 💕

Yes, the numbers are very interesting and why they change so much is also something I would love to know. I am having anothercNK cytokine and NK cell assay at 12 weeks but what I dont really get is how helpful that info will be. I would think that my NK cell activity would be lower because of the pred but I dont understand how they will know if it is safe for me to taper.
I know Gizmo mentioned earlier that Dr S weans from 12 weeks. I would really like to understand the science/reasoning for that, I.e. why is the fetus considered safe from NK cells and cytokyne levels from then but they affect it so badly earlier in pregnancy. I think that's what makes me nervous. It's a bit like when you have a headache with a cold and take a paracetamol to block it and then it starts to come back a few hours later. I just worry about it being the same with the pred because I dont get why not :)
I have tried to find info on why the baby is as safe as it can be at 12 or so weeks from immune issues but i cant find anything :)

I wondered if my numbers were higher due to pregnancy but Dr S said no your NK numbers will go in peaks and troughs, so no particular reason for it 🤷‍♀️
I wonder why they are doing another blood test 🤔 Yes Dr S weans from 12 weeks so you are about 16 weeks by the time you finish. I think its because the placenta has properly taken over by then and the pregnancy is properly established. Whereas earlier on, your body might be fighting this 'foreign object' that's trying to grow! Even in 'natural pregnancies' you are only usually considered out of the danger zone after 1st Trimester. Also I just read this on a forum: "My clinic told me that the placenta would have been making all the necessary hormones for a few weeks now and if the baby is growing as it should the placenta is definitely doing its job." So I think that's quite reassuring?

Yes, that makes sense re the numbers. Re the re test I can’t help but wonder if I am being a bit of a Guinea pig in that they know that I am fine to start tapering but they may want to find out for research purposes how my NK cells and cytokines are doing under the protocol at this point in my pregnancy. If that is the case it’s a lot of money for me to pay out unneccessarily but I guess I am thinking I didn’t have to pay for scans and couldn’t have the intralipids so I have saved money there and if the info in any way helps their ways of working with other ladies in the future then I am happy. They did give me the choice of having it redone or just tapering and I did feel obliged really x

@Newbeginnings22023 i am so sorry to hear about your mum, it must be soo hard and totally get why you need a break, just not in the right headspace at all. I really hope she gets better soon.

@Deerdancer34 thanks for the tip about prescription, every penny counts and i just tallied up how much i have spent with CRP and its £15K now :( with nothing to show for it.

Hey @Hopeandfaith1990 how was Spain? When is the potential transfer date? how are you feeling about it? I have been a bit up and down, it was my due date on sunday for 'Olive' who we lost at the end of Jan :( so felt a bit wobbly, plus lots of childrens birthday's and my best mates due date is coming up and i am avoiding her - she is really pushing it in my face - sending due date predictions in our whatsapp group, i know i am extra sensitive but it felt quite unncessary. Had my Baseline scan yesterday - it went OKish, but because of my Chemical Pregnancy - they want to scan me on day 1 or 2 of my next cycle. They found 10 good sized follicles and some smaller ones and she said it was really good considering my AMH is fairly low. Some follicles were bigger than others - so want to make sure when we start - we are stimulating at right time with right meds. So in Limbo a bit - but i am going to stop all meds except vits etc for a month whilst we do egg collection, as even if we go ahead with August - it won't be till October till we have frozen transfer and i can restart the Hydroxy in September so it is in my system for 4-6 weeks.

I also was asked to be part of a study at Kings and they did a full heart scan and liver scan and tested all blood flow and everything looked healthy which is a relief as i told you guys before i have high cholesterol. I also have my birthday next week - turning 37 :( it has been a full 4 years now since TTC. I see lots of people that got married the same time as us who now have two kids. I know i just need to change my mindset on what my life will look like now - sorry for the ramble.

anyone heard from @Gizmo1983 hoping everything is ok. Sending love to you @Objectiontime for your 12 week scan. Yes the placenta takes over around 11-12 week mark so they say your in the safe zone from week 10 + on immune issues at the CRP clinic.

@Fletchasketch glad intralipids went well, annoying they couldn't find a vein. What nurse did it for you?

Love to all x

@Jecca88 Spain was a relaxing change of scenery! I needed it tbh, wish I was chill enough to go away in the TWW after transfer but I’ll be too anxiously overanalysing every single feeling lol.

I’m sorry you’ve been a bit wobbly - due dates are so hard, especially when you’re still in the infertility / ttc trenches. One of my best friends is also due v soon, luckily she’s not pushed it on me at all but it’s still very much in my face even though she’s been very good and understanding about my feelings. It’s so unnecessary for your friend to be lording it about in the WhatsApp group, she needs to read the room a bit.

baseline scan sounds good - I was also scanned on CD3 before starting stims. Hopefully they can get a plan in place soon.

that’s great about the study and results, must be a relief.

I feel you on the mindset - I think like this quite often. Some of my friends who started ttc after me are now starting ttc their second and I’m still here in the same position hoping for my first live birth. Once we finally get our babies it will all feel ‘right’ I hope. It’s just hard to envisage that when it feels so far away atm. 37 is still v young and lots of people only decide to ttc at this age. I know that isn’t what you’d intended for your life but time is in no way running out 🩷

I had a wobble this morning - so grateful to have good embryos etc and the potential for transfer but I’m so scared of both outcomes 🤣 if transfer works I’ll be living in anxiety and so worried about another MC. If transfer fails I’ll be so upset. Just feel bitter today about how much we’ve all been robbed of joy in this journey. I just look at my friendship group and it’s been so incredibly easy for almost all of them and I just don’t understand how or why our journey has been so different!

But generally doing okay and trying to stay positive.

haven’t heard from @Gizmo1983- sending love and hoping you’re okay.

love and babydust to all xxxx

@Objectiontime Seems a bit annoying you have to pay to have them again...! When is your scan? crossing everything tightly.

@Jecca88 I really feel you re age, it took me a long time to accept. I totally get how you feel...so many told me you are so young but I wasn't young in my head, it wasn't how I had pictured and like you said seeing friends 'just get pregnant' cut deep and still does tbh. I actually had to cut myself away from a lot of friends because I could not cope being near them and even some family with there well meaning 'I had this friend who TTC for x number of years and then conceived by going on holiday blah blah blah...' 😡just not helpful or wanted, so I told them I didn't want to discuss it. Its really insensitive of your friend. Protect yourself and know we are here to support you 💕 And I know you may want to scream but you do have time and when it happens time will melt away 💖 Realllly good news about your follicles 💪

@Hopeandfaith1990 You've got it in one about that feeling of being robbed and how it's not fair it's us that has this journey and everyone else has the 'normal' journey of let's have a baby, done. But when it happens, you will appreciate your baby to the ends of the earth 💕When's your transfer? You've got this, just keep concentrating on those good embryos 💪
Much love 💗