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

I’m so sorry you’re experiencing this @MC8 , I don’t have any info I’m sorry, but just wanted to say that I really hope your EPU can help if they’re open today and that I’ll be thinking of you xx

@Jecca88 thanks for your reassurance on testing - yep I've got my tupperware ready! To be honest it is very light atm, hoping it stays that way until a plan is in place.@Gems2811 thank you, I called EPU and am waiting for a call back, feeling a bit calmer now - hope you're both holding up ok xxx

How is everything going @MC8 ??

@Gems2811 i am so sorry you're experiencing this. Have you been with the crp clinic this year? Have they said as to why this miscarriage might have happened? it could be due to immunity still? Did they prescrib you prednisolone?

I was with CRP until March this year and after 6 months of super ovulation nothing had happened and I found out I have pretty severe endometriosis. CRP wanted me to do another round with endo and I just felt that the endo needed addressing so I banked embryos and got a lap done and parked CRP. I was planning to do the whole protocol when I transferred but fell pregnant the first month after my lap. I was taking hydroxy, aspirin and progesterone but maybe I do need the Pred and intralipids too, or maybe it was genetic, so hard to know. The nhs are going to test the fetus thankfully, my nk cells have only ever been borderline and so it’s hard to know where to focus your energy and funds isn’t it @Jecca88 and as I’m new to the thread, I don’t know if others have had a few diagnoses going on concurrently? CRP had swapped Pred for hydroxy on my protocol cos I was having side effects from the Pred but it seems like some people take both rather than one or the other?

@Jecca88 Thanks so much for checking in, I’m going for surgery on Wednesday. EPU called back late Saturday afternoon, and I’m ashamed I had a bit of a meltdown as they didn’t offer any reassurance or advice, only that they were still waiting to hear if consultants would approve surgery as according to them the ‘risks outweigh the benefits’. I get they have guidelines etc, but their clinical-box-ticking approach has been so frustrating and really doesn’t put patients first.

Anyway, this morning they called back with a date, which I’m relieved about, thankfully not long to go. Although I’m feeling quite crampy and it’s been getting heavier daily so still hoping I hold out. Been taking 400mg progesterone (utrogestan) and wondering if I should up the dose - wish I’d thought to ask about it earlier, although I’m in tomorrow morning for pre-op bloods etc. so let’s see.

Oh also forgot to mention, after I complained about the Dr’s comments they referred me to Petals for counselling. I hadn’t heard of them before, has anyone else had it? I am grateful for the referral, but also wondered why they’d never thought to mention it to me before, feels like it was triggered by the comments rather than my history which is a bit disappointing. But I’ll take them up on it nevertheless.

How are you doing? You and @Fletchasketch will be in my thoughts tomorrow.

@Gems2811 hope you're holding out ok? I agree it's so hard to know where to focus energies on diagnostics, it feels sensible to focus on one area at a time before exploring others, it all takes time (and money!). I have borderline NK and high cytokines, and although CRP has said there are more things they could do for me on the immune side, if testing comes back normal again on this one I'm thinking of looking at other tests outside of that as well - possible womb lining, microbiome. It's great you have embryos banked. How was your endo diagnosed? Did you have symptoms?

xxx

Sending the most positive thoughts and @Jecca88 and @Fletchasketch

@MC8 that's good they've given you a date, I hope the weekend wasn't too painful or distressing. I'll be thinking of you tomorrow. I haven't heard of Petals and never be ashamed of having a meltdown, I think it's perfectly expected with the hormones, the emotions and the shock, especially when you've been through so much already. It's being at the hospital which sets me off too, due to the box ticking, and my EPU is right next to the labour ward and so I had to listen to a woman in labour while I was waiting to have my surgical discussion and it just brought everything back up which I've been dealing okay with at home.

I've always had symptoms of painful intercourse with bleeding and excruiating ovulation pain since I was a teenager, but not really ever abnormally painful periods, which is why I think my other symptoms have always been ruled out for endo, despite me asking many many times over the years. But the cycle before I was due to start IVF at Kings I ended up at A&E with 10/10 ovulation pain again which I was worried might be an ovarian torsion and I thought this just can't be normal to happen numerous times despite what I keep being told and so I did the Endosure test and booked myself in with an Endo specialist and he said, 100% you have endo from those symptoms and sure enough my laproscopy came back with rectovaginal endo and mild adenomyosis. I just wish I'd known sooner...😪

Hi all just catching up with the thread.

@Fletchasketch hope you’re feeling okay, I think the pred can actually cause people to feel quite rubbish - I do wonder how people who use it for other things stay on it almost permanently. I have an aunt who uses it permanently for arthritis. Hope the NIPT went okay too xxxx

@MC8 hope you’re doing okay, so sorry for what you’re going through. Glad you’ve got a surgery date and never apologise for a meltdown, we’ve all been there and it’s entirely understandable. I also considered the micro biome test but it’s so expensive.

I agree @Gems2811 it’s so hard to decide which testing / treatment to do because they’re all so impactful and expensive and time consuming. Diagnosis wise I’ve ‘only’ got quite high NK cells but also use Fragmin for blood thinning. I was taking both pred and hydroxy but I’ve stopped hydroxy. God knows if it’s the right thing to do. hope you’re okay.

Hospital called me yesterday and said my hysteroscopy biopsy was all clear so I’m really grateful for that. 2.5 weeks of thinking I could have cancer wasn’t great but my overactive anxious brain can take the blame for that. I’m going in again on Friday for my baseline scan for our next transfer which will hopefully be in a few weeks.

love to all and hope you’re ok @Jecca88@Objectiontime@Deerdancer34@Rainbowchaser87 and everyone xxxx

Oh my goodness @Hopeandfaith1990 that would have been an unimaginably stressful 2.5 weeks, your poor thing! Best of luck with your baseline scan and transfer xx

Thank you! Yeah it wasn’t great - I know it was really unlikely obviously but I’m so used to assuming the worst 😅 and it’s NHS results so I actually think 2.5 weeks wasn’t too bad of a wait.

Thanks @Gems2811 my scan isn't till 4.30pm so have to wait all day :( Ahh so you did IVF - which is what i did but got pregnant after egg collection. I take both pred and hydroxy. i really hope you get some answers on genetics. When is your D&C? did you get your embryos pgta tested? I also did IVF at Kings. After the Lap - has the endo been resolved? sorry loads of questions. sending lots of love.

@MC8 i am so glad they have recommended Petals, annoying that you have to complain - and it isn't standard. Will be thinking of you tomorrow hun - so sorry your husband is home till friday.

@Fletchasketch good luck today - my appointment isn't until 4.30.

such a relief @Hopeandfaith1990 glad results are back in and you're moving forward with the next transfer.

@Gems2811 sorry darling u are going through this again…did u not take meds the whole pregnancy? How far where u when miscarried? U did all u could do…we all want our babies and going through all this is unbelievably painful…my heart goes to u!❤️

@Hopeandfaith1990 I am OK dear! How are you doing? ❤️
@MC8 I heard of Petals…they are good…I am doing therapy myself through NHS…it helps…I hope you are ok? As OK u can be in this difficult time …❤️‍🩹

@Jecca88 thank you. Hopefully today is a 'good news' day as all looking good at my scan- measuring 11w4. Just need to wait for those NIPT results now and then I might be able to believe we're having a baby.

Wishing you all the luck in the world for your scan later.

@MC8 glad they agreed to the surgery and that you don't have much longer to wait. Will be thinking of you tomorrow, hope it goes as well as it can.

@Hopeandfaith1990 thank you for your good wishes, very pleased to hear your biopsy results were positive. Onwards and upwards for the next stage.

@Gems2811 thank you so much. Hope you're doing okay. Agree with others, it is utterly overwhelming trying to work out which tests are worthwhile.

@Fletchasketch glad you had a good scan and everything is progressing. Did they say how long the NIPT results take? Do they just send them to you?

good news day for me too - all good on my scan today! Quite a relief and baby is measuring bang on 7.2 - going back next week for the 8 week scan and intralipids. She did notice the subchorionic bump - she didn’t seem massively concerned and said there is nothing we can do but monitor it. I love Dr Edge, she really is the loveliest and just puts you at ease. I feel so confident with her. She has given me some drugs as a precaution incase I get cramps - basically they use it to stop preterm labour and since this bump is in the womb it can sometimes cause cramps and expel it the pregnancy.

Yay @Fletchasketch @Jecca88 so happy for you both having positive scans 🩷

Dr Edge sounds amazing, glad you have her to reassure you. It sounds sensible to have the drugs. Hoping the pesky bump buggers off soon 💕

@MC8 Thinking of you today 😘 I was referred to councilling after my ectopic and it really was invaluable 💓

@Gems2811 Its so hard isn't it, I sort of feel its all a bit trial and error what they give us... I'd love to split myself and trial different drugs and quantities to see what was actually needed 😅

@Hopeandfaith1990 You poor thing, that must have felt an eternity 💞 At least you know its all good now and its a fresh new start 💪🤗

@Jecca88 @Fletchasketch Really really delighted with your news 💗 One more step in the right direction!

My news, I've just had my 2nd negative. I'm amazed how triggering I still find it. That avalanche of emotions when you see the white screen, doesn't get any easier. I still resent having to go through a 'process'... what it must be like to dtd and get a positive test like 'a normal person'....! Anyway, onwards and upwards, at least I can come off the pred! Much love to you all 🥰

@Jecca88 brilliant news! Honestly, so so pleased for you. It must have felt like such a relief that Dr Edge wasn't concerned about the bump. Honestly, she is SO wonderful- I actually postponed my 10w to this week because she was off and if it was bad news I knew she'd have made it as easy as possible. At the same time she seems genuinely delighted about the good news too which is so lovely. NIPT results will take 5 days, so should have them by this time next week.

@Hopeandfaith1990 thank you so much, I love it how we are all rooting for each other here. I have everything crossed for you for next month x

@Deerdancer34 oh rubbish, I am sorry to hear this.I know exactly what you mean about the process- it is just wild all the hoops we have to jump through and the endless pills we have to take. Will be worth it in the end.

@MC8 All the best for today, I hope you're well looked after. Will be thinking of you and hoping that this is the last time you have to do this.

Lots of love to all x

@MC8 , I hope you went okay yesterday, that it wasn't too too awful and they've processed the testing for you. I had mine done yesterday as well, I managed to get in at another hospital. Thinking of you today and hope you're being looked after. I found it quite tough on the body, I woke up vomiting in the night, I guess from the anaesthetic.

@Rainbowchaser87 yeah I took everything I'd been prescribed from CRP, the only thing I didn't do were the intralipids. Definitely @Deerdancer34 ! It all feels so trial and error! I was having Fragmin injections aswell with the clinic, so I took those the whole time too, my stomach is in bits. I'm sorry you had a negative this month, it's so tough when each cycle is so much effort with the protocol

Congrats on the scan @Jecca88 , that's just the best news! Dr Edge is great isn't she. Yes that's just like what happened with me! Thankfully I have some embryos stored, some are PGTA tested and some aren't. No known euploids, but two low level mosaics, one is chaotic, and so now I really don't know what to do, try a transfer or do another collection. I've been trying to educate myself on low level mosaics. They said it will take 5 weeks for the genetic testing on this loss and so that might help me navigate whether it was chromosomal or immune related. The endo has been resolved but I think the best window they say is 6 months after it and mine was in August..

Brilliant news on your scans too @Fletchasketch . Rooting for both of you! And anyone I've accidentally missed xxx

@Gems2811 ah, glad yours is over now too. I'm so sorry you've been struggling with after effects and hope it settles down soon. Mine went fine thank you, they've sent it off for testing (approx 6 week wait for me). Couldn't fault the doctors, nurses etc. everyone really lovely. My old RMC consultant actually did the procedure so it was good that I could meet him beforehand and tell him about my protocol at CRP. Didn't get much of a gauge on his thoughts on it all, but let's see what happens next.

That's so frustrating that your endo took so long to be diagnosed and you were repeatedly dismissed - its such a common story and so unfair. I'm glad it's all sorted now though, and hope the break will allow you time to rest and decide how to move forward once you get your results.

@Hopeandfaith1990 That's brilliant news, you must be so relieved - best of luck for tomorrow!

@Jecca88 @Fletchasketch So happy to hear both your scans went well! Will be thinking of you next week with the NIPT results / 8 wk scan.

@Deerdancer34 I'm so sorry. It's incredibly tough and such a relentless cycle to pick yourself up and go through it again. Totally normal to feel resentful - I have all those feelings too.

@Rainbowchaser87 thank you, yes I am ok - a bit on edge with good days and bad days, but overall ok. I'm glad to hear therapy has been helping you. I'll book my appointment soon :)

Lots of love to everyone and thank you for all your wishes xx

@Gems2811 I am so sorry you're going through this and that the surgery has left you feeling rubbish. I hope you're able to get lots of rest and take as long as you need off work. I found that two weeks was the absolute minumum I needed to feel human again, so hope you have that option. Sending lots of love.

@MC8 glad to hear yours went well and that this part is at least behind you. Hope your test results come back sooner rather than later.

I've just had my NHS scan come through, which would mean three scans in three weeks, thankfully I spoke to them and they're happy to accept the CRP scan. A big relief as I don't think my shattered nerves could take that many scans in short succession. It is thankfully starting to get a little easier as 12 weeks approaches. Thanks to everyone for your good wishes and sending love to everyone going through a rough time xx

Man, do I feel foolish now writing that last post. About an hour later we had an email from the CRP asking us to take a call from Dr Edge. We had an agonizing few hours where I rushed home to be told that our NIPT had come back positive for Down Syndrome. We will go for additional testing, but she was very clear that it was highly likely to be accurate and everything I've read online backs this up.

Hard to believe how happy we were just 24 hours ago and am utterly terrified of everything that lies ahead and the inevitable awful decision. I will probably step away from this thread for a little bit at least, if I don't get back to you thank you all for your solidarity, your advice and mostly, your kindness. This is the most awful journey and you have all made it a little bit easier. I am rooting for each and every one of you that you get your happy endings.

@Fletchasketch Sending you lots and lots of love and strength with however you decide to go forward. Talk and research... I don't know if you have seen Ellie on Strictly but I find her very inspiring 💞 Its a very personal decision, so take your time 💓

@MC8 and @Gems2811 I hope you are ok and recuperating well. Much love to you both ❤️

@Fletchasketch I’m so sorry you’re faced with such a difficult decision and situation especially after an incredibly challenging journey, it’s so unfair. My heart goes out to you and your partner. Whatever decision you make, we are here for you. Sending you love.

What a shock for you and your partner @Fletchasketch I’m so sorry you’re faced with a difficult and deeply personal decision. We’re here for you no matter what and will be thinking of you if you take a step back from writing. Sending love xx

@Fletchasketch Wishing you lots of strength, no matter what you and your partner decide. It sounds like Dr Edge has been very supportive throughout - I think CRP are lucky to have her. Please know that we are all thinking of you...