Immune/NK cells pred thread #34

@AmzTTC Its so bloody hard and no one understands unless they've been through it. And its amazing where your brain can go isn't it, the days feel very long...Have good podcasts etc to take your mind away from it all sometimes. I'm very glad you're getting a scan, do update us!
So because I conceived my daughter through Superovulation (after 4 losses), I decided I would go straight with Superovulation to conceive a 2nd baby but I have just done my 11th cycle 😩 I asked my GP about IVF and she seems to think I could get it through NHS but I've read everywhere if you have a live child then you can't, so not sure about that. I'm thinking it might have to be through CRP, I know many go abroad but I think that might be difficult with my daughter but not sure.
Seriously I thought I would know what's what this time round, didn't think there would be more obstacles!

@Hopeandfaith1990thank you so much this gives me so much hope, my family all keep telling me not to get so many scans but I just feel like nobody understand unless you’ve been through it! I know pred makes symptoms but I didn’t realise it completely masks them. I’ve booked a scan for tomrorow so I’m praying everything will be okay… im so happy for you reaching 35 weeks, just over a month and you’ll meet your miracle baby💕

@Deerdancer34thank you so much for this. It’s so true, sometimes I forget that it’s more natural for the body to want to stay pregnan than not but it’s so hard. I’m so sorry about your negative. I’ve been following the thread but not completely, would you do IVF under CRP or NHS? & have you tried super ovulation? Sorry if you’ve already said it!

@AmzTTC Its completely normal what you're experiencing. I didn't really have any symptoms in my First Trimester and really it is just endurance to get through it. I always tried to have the mantra that I am pregnant now, I will deal with anything if and when it comes because honestly my brain would just spiral and the panic would get too much. Be kind to yourself and don't worry about having extra scans etc, if it eases the anxiety then do them. Gentle congratulations and one day at a time, we are rooting for you!

I had another negative, so going to seriously consider IVF 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 ❤️

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

@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!

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

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

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

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!

@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 💖

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

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 @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?

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, 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.

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.

@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? 💓

@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 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 💓