Immune/NK cells pred thread #34

[Hopeandfaith1990]

Hi all, started a new thread as the old one was full. Not sure if this is the way to do it but I've c&p'd the list of people on the previous one as much as poss:

Old thread here: https://www.mumsnet.com/talk/conception/5228367-immunenk-cells-pred-thread-33?page=40

@Jecca88
@Gizmo1983
@Deerdancer34
@Objectiontime
@SWMum9
@TammyinCork
@Newbeginnings22023
@Fletchasketch
@Morgan236
@CarpeDiem75
@ALittleLight
@MC8
@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

Thank you @Hopeandfaith1990 and @Deerdancer34 for your kind words

@Hopeandfaith1990 congrats on being in your 28th week and that your exam classes have left for study leave! That's a good idea about the Clexane, I'll ask them for a final prescription and I hadn't thought of recurrent miscarriage, so thank you. Intense is the word for Dr S haha. I got told off by him too for quite a few things. Out of interest would he have wanted you on Hydroxy until you're full term? I'm on it too and haven't got that far in my plan yet

@Deerdancer34 I went through Ark in Athens, I was so tired and broke after commuting to and from CRP for a year, we felt that it would suit us best to take a holiday and do IVF around time in the sun. I felt quite battered and bruised by the consultations I'd had in the UK giving me like 5% chance and the Ark Dr was just the kind of hold your hand manner and optimism that I needed at the time. @Hopeandfaith1990 has given a really good run down of all the IVF stuff, I did a short protocol, and we did a frozen natural transfer because I have endo and was embryo banking prior to my endo surgery before we put anything back in. I ovulate on my own and so my Dr didn't want me on an extra meds which we didn't need to use. He does all the immune stuff that CRP do and so I was on all the immune meds alongside. Your fear is completely understandable, I had a lot of fear, like you're saying you're feeling, but I actually in the end found the SO stuff more full on in some ways in hindsight. I think maybe because I felt empty handed when a SO round didn't work after all the money and effort, whereas with IVF, when I was putting embryos in the freezer I never felt like I was completely back to square one if that makes sense. Everyone is different though and IVF is a big step and feels very overwhelming initially doesn't it. Feel free to literally ask anything, I knew not a single thing about it when I decided to do it and I had put it off for a very long time xx

guys I forgot to say the funniest thing about the Dr S appointment was that he said ‘actually I can tell you took the steroids for too long because you still have ‘moon facieas’ - puffy face’ 🤣 and I said ‘actually it’s gone down a lot since I stopped, this is just my normal face that I’ve had for 35 years’ 😂 of course he disagreed though. My face is very spherical and has always been very round haha.

@Deerdancer34yes I will have the mental health support weekly if I want it until end of September which is amazing. Very grateful. I know IVF can see very overwhelming but actually when I actually got started with it, it was nowhere near as scary as I’d thought it would be. Totally feel your apprehension though as I was exactly the same.

@Gems2811 yes, he wants his patients on hydroxy the whole way through, he says you don’t need to have a break from it. I’m sure it works but I literally just followed the IVF doctors suggestion to try something different after the failed FET. How are you feeling? Xxx

love to all xx

@Hopeandfaith1990 that actually made me laugh out loud, between us we could probably write a book of the crazy comments we've come across during these times, imagine saying that to someone! Goodness. Finding the humour in these things has become a superpower!

That's good to know about the Hydroxy, thank you! Apart from awful migraines, I'm feeling a bit better thanks and I thinkkkk it might all start to be sinking in xx

Completely agree @Gems2811 - my humour has definitely
gotten darker too 🤣😅 that’s great (aside from the migraines). Around 20 weeks is when I started to feel some hope too 🙏🏻 this is such a tough old journey and we spend so much of living in the land of protecting our hearts xxx

@Gems2811 Thank you so much, that's really helpful knowing what you did and also how it makes you feel because SO can feel really relentless, especially when its not working 😅 I'm definitely feeling a bit better about it hearing your stories, its just a big step and the worry of it not working. I'm glad you found the Ark Dr - you need that person that actually cares and gives you the hope don't you?
Will you find out gender!?

@Hopeandfaith1990 That made me giggle! Thanks Dr S!

I had my Hyfosy yesterday, it took a while for her to find my tubes so hopefully flushing them has helped and she found no polyps in my womb. So I think we'll give SO a few more cycles so I can get my head around IVF 🫣
Lots of love to all 💓

@Deerdancer34 I hope the Hyfosy was okay, and hope flushing them has helped 🙏. They're pretty uncomfortable aren't they. You so need a bit of hope and compassion, I actually looked forward to every scan during stims because he'd give me a little pep talk each time, saying that my body has done a wonderful job and that I'd really put my all into the cycle and acknowledge the effort and how vulnerable you feel. It sounds really silly but I needed that after so many years of being told that my body wasn't up to scratch for one reason or another. Dr Edge is good at this too. We'll all be rooting for your next SO cycle xxx

@Gems2811 Aww that's perfect, its what you need to hear because you arrive broken and feeling the worst about yourself. I completely agree its important to have that human touch. Dr E was like a shining beacon & the first person who I saw after 3.5yrs who was positive, said I could do this and give me actual hope! And even now, every cycle she fills me with hope, I always feel I need to see her! Thank you 🙏🤞
When's your next scan? 💓

Hello all, thank you for your kind wishes! It's been nearly a month since I posted, but I am still waiting for the results of my ERA test... I should get them back in two days. Also - and this was a real pain - the Lister overcharged me by £1158 for my updated immune bloods on 17th March! I spent a lot of time and effort trying to get the money back, and it was only paid back last Thursday - nearly two months after my appointment. Added a good bit of stress to the process :-(

Great to hear how everyone is doing!

@Auberginesky: Lovely news re: your positive. The scans are part of the deal with CRP, which was another reason why I got a second opinion from Dr Thum - he is happy to prescribe medication and is OK for you to get scanned by your own EPU. As someone who now lives in Ireland, I couldn't justify flying back to the UK every time I needed a scan.

@Jecca88: Great to hear that you can go to term without being induced - sounds like everything is going v smoothly! It has been nearly a month since my mock transfer for the ERA and the HRT meds made me feel not great... Achy boobs and tired. Wonder if I could use a different protocol for the actual transfer - Dr Victory says that Letrozole reduces the risk of miscarriage?

@Gems2811: Delighted for you and glad you got such great treatment from ARK! Fair play! Would your IVF clinic be able to prescribe the Clexane?

@Deerdancer34: I didn't want to do IVF either for a long time, but turning 42.5 and no pregnancy after three months of trying on CRP protocol pushed me to it! Would strongly recommend doing it abroad if you do go for it!

@Hopeandfaith1990: Glad the mental health appointments are going well, and that's amazing re: 28 weeks. It's sad that you were shamed for stopping the hydroxy - there was obviously a reason why the IVF doctor told you to stop.

Hi, sorry to jump on. Wondering if anyone has any experience of pregnancy after loss whilst being on hydroxychloroquine rather than prednisone? Majority I know are on both, or just prednisone. I have recurrent miscarriages and our consultant thinks hydroxychloroquine is enough to help.

Me! Also I only have borderline NK cells. I had neurological side effects from Pred and dr shehata said that hydroxy was what they used during covid and it was very very minimally less effective than Pred standalone

Hi @Gems2811 that’s reassuring to know. Most ppl with RPL seem to be on both and it was panicking me a little. My consultant doesn’t seem to think pred is necessary. Do you mind me asking if all went ok? Did you also go for intralipids alongside the hydroxy?

I haven’t had any further immune related losses, I had IVF in the end and I’m pregnant now (21 weeks) and am still on hydroxy. I stopped getting intralipids once I switched to IVF xx

Hi all, how is everyone?

I didn't intend on going quiet, its been a challenging few weeks with the heat/pets/work life/life in general! Everything is fine pregnancy wise. One of my cats had a tumour we had to get removed and its been a lot in terms of vet visits etc as she is a very complex character lol.

I'm 32.5 weeks now, which seems insane. Starting to do some preparation in the house and have bought a few things, still needing to quieten the voice inside my head that says I'm jinxing it etc but generally feeling okay. Still doing weekly therapy and had a very challenging session yesterday where I had to talk to myself as if they were on a chair, it was very confronting but cathartic.

@TammyinCork How are you? Are you close to transfer? Apologies, I couldn't remember your timeline/plan.

@Jecca88 how are you?! Thinking of you and wishing you so much luck for the final stages of this current journey lovely. xx

@Gems2811 so lovely to see you're 21 weeks, how are you feeling? Have you had the anatomy scan?

@Deerdancer34 how are you? Glad the HyFosy went well and it sounds sensible to give SO another few goes now you know its all functional and polyp-free in there.

Lots of love to everyone xxx

Hey guys,

nice to hear from you @Hopeandfaith1990 sorry it’s been tough - glad you’re getting the therapy and wow - 32.5 weeks amazing! I have also been quiet- all good from me - actually getting induced tomorrow at 39 weeks so please wish me luck. Been a strange week on maternity leave this week - in limbo wondering what to do with myself and can’t quite believe or comprehend what is about to happen. feeling rather anxious and just trying to focus on staying calm - easier said than done.

hope you’re well @TammyinCork and wow @Gems2811 21 weeks is incredible - how are you feeling?

@hazeleyesJ I actually went on hydroxy only for two pregnancies with CRP and lost both of them - one they said was because it was triplets and higher risk anyway and the other one was a blighted ovum - maybe due to egg quality. When I introduced steroids I got to 13 weeks but lost due to chromosome issue and also had an early miscarriage too on both steroids and hydroxy. This pregnancy I am on both - no idea why this one worked.

please send me good luck vibes for tomorrow guys! Xx

Ohhh Jecca I am sooo excited for you I feel emotional 😂😂🥰🥰🥰 you are going to absolutely rock it and your little boy will be here 🥹🥹🥹

it’ll be completely natural to feel in limbo and a bit panicky - you’ve been building towards this for literally years and equally so much of pregnancy is just waiting around ! I’m sending you so much luck and can’t wait to hear how it goes. Remember that it can’t last forever lol this is what I keep telling myself. Xxxx

@Hopeandfaith1990 Well done with your therapy session, its really not easy! Oooo 32.5 weeks, feels even more real when you get to 30+ weeks! I'm glad you feel you can start to get some things ready, hope you get some feelings of excitement- you are allowed 💖💖💖

@Jecca88 Good luck tomorrow, we'll be waiting to hear when you're ready 🥰 I'd advise spray water and good music/podcast distractions! It's really so exciting & nerve racking but you will be amazing - you've been through so much, so you can do this 💪

I'm onto Cycle 11.... feeling a bit emotional about it, we'll see how this pans out...

Lots of love all 💖

Thank you @Deerdancer34 I’m really trying to embrace the positivity and excitement 🥰 school is becoming more challenging but I’ve just got to get to July 3rd which is the end of term so reaply
hanging onto that.

Super good luck for Cycle 11 for you, praying and manifesting that this is your cycle ❤️❤️❤️

Wow, @Hopeandfaith1990, 32.5 weeks is incredible, and it sounds like the therapy is really productive and doing a lot for you!

@hazeleyesJ Yes, I know of people in the Reproductive Immunology FB group who said they were only on hydroxy rather than pred, and had a successful result.

@Deerdancer34 Rooting for you with Cycle 11 and the next steps in your journey!

@Jecca88 Sending you the very best vibes for the induction tomorrow! Will be thinking of you! The calming music should be helpful!

I am 43 today and my ERA and uterine microbiome results came back on Tuesday. Apparently the only thing they found was that I have low lactobacillus levels, so I need to take probiotics before my FET, which will be in July, they say!

Hey ladies, I am pleased to report my baby boy was born on Monday 8th June. Baby Rio came into the world via emergency c section after 52 hours of labour - basically got an infection and his heart rate was going crazy and he flipped so back to back and just safest option was c section. There was a point I thought we were gonna lose him. We are back home now after a week in hospital after he had to be on antibiotics. He is such a good baby and can’t stop staring at him. I still can’t quite believe we have got here. 5 years and 7 miscarriages and - £££ of pounds and tears combined with a concoction of drugs. Sending so much love to everyone on this journey and really hope we can all get there. Xxx

Omg @Jecca88 I have been so excited to hear from you! Sooo many congratulations and im
so glad he’s here and it’s going well now you’re at home. I can imagine that it’s the most surreal experience. Rio is such a lovely name.

I’m sorry about the infection and having to be in hospital, that must have been so so scary. after everything you’ve been through, it’s just not what you needed. How is your recovery?

I’m so so happy for you my love xxx

Thanks my love, I would send a picture but don’t want to be triggering to anyone.
As much as it was scary - being in hospital was amazing the midwives are incredible - we got so much support and tips. I feel like it set us up for success. So as much as it was sleep deprivation - I defo have fond memories and lots of laughter - mainly through delirium. He is such a brave strong lad too - having canulars and multiple blood tests a day. Made him super resilient. X

Huge congratulations so so so happy for you. I love love love hearing successful and healthy pregnancies after loss💙. Enjoy your rainbow- you deserve it with all you’ve gone through. I’ve been silently reading and rooting for you

you give us all hope!x

@Jecca88 Cannot tell you how delighted I am for you! Your baby boy is here 💙 😍 Soak up every precious minute - know its ok to feel lots of ups and downs. Newborn life is hard and when you've been through such a journey, it adds more to it all. Sending you so much love!

@Hopeandfaith1990 Good luck with the coming heatwave!

Hi all,

i just wanted to ask for some advice to anyone who might be able to help. I’m currently 9 weeks pregnant under Dr Shehatas protocol- the past 2 weeks I’ve been nauseous, in bed and I’ve vomitted a few times too- there’s been 1/2 days I’ve had less symptoms but they were still there.

im 9w 2d but the past 3 days I’ve had absolutely nothing - like the slight nausea here and there, my breasts still hurt but even that’s so up and down. I know prednisolone masks symptoms but I’m so terrified that somethings gone wrong again. I’m on anti cramping medication and progesterone too..

has anyone else experienced this? I’m only 9w but I’ve had 5 scans already because I just can’t take the anxiety but I’m scared I’m taking too many scans now!

Sorry if this triggers anyone PAL has got me overthinking everything and I’m so worried now

I'm absolutely thrilled for you! Rio is a lovely name - what a warrior! Hope you have lots of support around you for the newborn phase, and are making a good recovery from your infection. You have given us all so much inspiration ❤️