Immune/NK cells pred thread #34

@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 💓

@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

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

@Gems2811 Congratulations! What lovely lovely news! Definitely normal how you've felt, I think we protect ourself to think the worst so that anything good is a bonus 😅 So thrilled for you! What IVF clinic did you go through?

@Hopeandfaith1990 I wondered if you would get to end of term, that would work very well! That sounds quite a frustrating appointment in a way with Dr S because it obviously worked you coming off Hydroxy etc Hope you were ok after it. Will you be able to carry on the mental health appointments for as long as you need? Ooo its a nice feeling after exam season and everything hopefully gets a bit calmer...I bet your students are excited too!

I had my AMH done last year so will have a look. Thank you so much for all the info, its super super helpful and I'm starting to feel less overwhelmed. I definitely prefer the sound of a natural cycle rather than fully medicated but suppose would have to see what they say as its been nearly a year and not fallen pregnant at all. Hopefully CRP would provide the steroids etc if IVF clinic won't, will just have to see. I'm still secretly hoping SO will work but I know I need to get the knowledge about IVF to stop being fearful about it all.

Love to all 💓

Hello ladies

I took some time off socials after my loss end of last year and so it’s been so lovely reading so many positive stories since I was last here.

@Jecca88 so wonderful reading how far along you are now and @Hopeandfaith1990
@Auberginesky gentle congratulations
@Deerdancer34 that’s amazing that you can get ivf on the nhs. I think Kings is the CRP satellite clinic?
@TammyinCork I hope your transfer goes well

Sorry for anybody I’ve missed!

I transferred an embryo in Jan and much to my surprise it worked. I’m 18 weeks and have only just started to tell people, pregnancy after loss is something else isn’t it. I felt completely numb until about 14 weeks and my body only seemed to register the results of all of my scans as bad news and I had completely debilitating adrenaline dumps after each one. But obviously I’m beyond grateful, that’s probably part of it, a defence mechanism. Does this seem normal?

I’m no longer with CRP and my IVF clinic is saying that now I’m in the second trimester, that the NHS team are overseeing my treatment and won’t prescribe now, I’m about to run out of Clexane, does anyone know if the GP prescribes it? The midwife had said I should ask my IVF clinic and I don’t have my NHS consultant appointment until next month - I’m not sure how to get hold of any?

Sending love to anyone who’s still in treatment xxx

@Jecca88 Yeah I'm a bit confused because everywhere I've read if you have a living child then you can't, so I'm holding my breath and we'll see...but the GP read that they will do for 2 children 🤔 I'm in London, think GP said it would be St Mary's or Hammersmith so no idea what they are like. I read that Kings seem pretty good? Haven't even looked into clinics yet, hard to know where to choose 😵‍💫

I felt weirdly emotional and cross when she said I could potentially have IVF because I couldn't help thinking, where were you after all my miscarriages and you couldn't give me steroids!?

Thank you that's really helpful!

@Auberginesky gentle congrats on your positive. I was in the exact same position as you and CRP needed to see me to issue the meds - i did find Dr Edge amazing and so reassuring - and luckily we had the funds so i just went with it, hoping and praying each week. This pregnancy alone has cost me just over £7K, think i have spent collectively £35K on fertility meds/scans and treatment. Could you ask to have the scans with the private clinic before intralipds rather than the ones in between?

@Deerdancer34 I actually got the IVF through NHS and i did it with Kings fertility. They gave me two egg collections and as many transfers it took to get to a live birth in a two year period. I actually ended up getting pregnant the month just after my egg collection - so never actually ended up doing a transfer. Also because i paid additionally for them to be PGTA tested (Which is not included on NHS funding anywhere)- i needed to wait for a transfer which is why i didn't go in the same month as the PGTA testing takes about a month to come back. Also I think i had OHSS - as they got so many eggs and sometimes they want you to rest your ovaries.

Thats amazing NHS could give you that, i was always under the impression if you had a child they would never fund it which is frustrating and sad. Have you had a look at any clinics you would like to go to? Not sure where you live? Yes i think they were always ok with me having other meds alongside the egg stimulation part. The egg stim part is quite brutal, but tbh - if you have had 6x plus Super ovulations and all the fertility shit you have been through, i feel like IVF will be ok for you - we almost become de-sensitised to it :(

@Hopeandfaith1990 Oh no I haven't had a Hysteroscopy, Dr E only mentioned the Hyfosy. I'll ask her about it. When will you finish work!? Its always best to check baby is ok so then it'll help you feel reassured 💓 especially think of what a journey you've had and all you've been through 💓

@Jecca88 Did you do an IVF cycle or just freeze your embryos? So nice to know you have them as a back up later on. Did you go NHS or private? Ooo June, my first baby should have been June - I think its a gorgeous month 🥰 Just make sure you pack some spray water or a fan for the hospital! I think that's lovely you may be able to go to term, glad your midwife sounds so supportive too, its important!

@Auberginesky Gentle gentle congratulations 🥰 Who are you with? CRP made me do all the scans with them which is annoying and expensive, plus they added in intralipids at 20 weeks whereas it only used to be until 16 weeks. Anyway I was offered 2 early scans with EPU - so I did those before I went to CRP so I could cancel the CRP one if there was bad news. It is annoying, my 20 week scan I had both CRP and NHS on the same day 😅 I don't know if its true but my husband said CRP have to do your scans and see you for insurance purposes as the medications and intralipids aren't officially recognised. But its so annoying!!

IVF ladies:
I actually rang my GP yesterday to ask about IVF and I was shocked because it might actually be possible for me to do IVF through NHS. I started reading about it and feel a bit overwhelmed about the different options of fresh egg transfer/ frozen egg transfer and then the different egg collections short vs long. Is one better than the other or just depends what you're going for? It sounds brutal the preparation for egg collection 🫣 Also would NHS let me have progesterone and steroids from early on? Because my problem always seemed to be holding onto the pregnancy.

Lots of love to all 🩷

Hey girls!
Its good to see how you are all getting on. I will reply properly later as so much has happened in this thread.

I have a question. I got a positive test, so I am 4 weeks. The NHS have offered me 2 weekly scans due to my recurrent miscarriages. I went to my immunology clinic and they said they want me to do their scans every 2 weeks regardless of the NHS ones. I feel quite irritable about this as they are charging 500 quid for the first scan and thereafter they are 300 with a consultation. Its just really frustrating as Im happy with my NHS team doing it and honestly its just costing a fortune.

They have said if I dont do their scans they may have to stop my meds and intralipids. I am quite upset as it feels like an ultimatum. Am i being inreasonable? Think I need a voice of sanity!

I am sorry @Deerdancer34 about your negative, IVF is so different to recurrent loss and yes so much to research - hard not to get obsessive. I did IVF egg collection back in August last year and it was a rough month don't get me wrong, and i am so grateful we got a great result and would feel differently if it didn't go as planned. Esp after the doctor said i would be lucky if i got 4 eggs - we got 23 in the end and even though this pregnancy is not via IVF we still have 7 embryos in the freezer. It was nice to have some control and you kinda of know day by day how it is going. So Due date is officially 13th June, but will know more next friday about birth plan. Right now i am open to anything except a home birth - so keeping an open mind.

@Hopeandfaith1990 I was exactly the same as you and I did get pregnant in the Jan 2022 but lost it at 12 week scan - i was so niave back then - still such a traumatic experience and really the start of everything. I watched something the other day whereby someone who had a hard fertility journey but has ended up with two children still says they have PTSD - basically your body is re-wired to think that things can go wrong. With all the trying and doing everything 'right' and it still doesn't happen can really make you change your entire outlook on life. When things do go right - my husband and i are honestly so grateful and just cannot believe our luck. With the Bulglary a few months back, we actually got a extra £14K in gap insurance - which we have used to basically renovate the house lols - bit stressful but still if we didn't get the car stolen we wouldn't have a lovely new bathroom and nursery.

The movements thing is so hard, i am understanding the patterns now and really didn't feel patterns until after 28-30 weeks. Every midwife appointment they drill it into you too which just feels scary. its so hard to not get in your head about it. But do go to the hospital just for any reassurance :)
Physically i am already fed up lols, its really ramped up in the last week - my ankles are swollen and just find it hard to walk longer distances. Bending over is no fun either. GD is good still and midwife thinking we will be able to go to term if we carry on this way and may not even have to have a induction.