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

@Jecca88 my husband mixes/preps all the injections and then I do them myself. I wanted him to be involved but I knew I’d have to do them myself (control freak). I had egg retrieval done on CD14 after 13 days of stims injections (I did Cetrotide to suppress and Fostimon to stim). I don’t think I was ever at risk of OHSS but I certainly felt veeeery bloated and uncomfortable by the time I got to retrieval.

I’ve had two periods since retrieval, the withdrawal bleed came 11 days after retrieval which i think is just counted as a period then I had another one in the cycle after that which was delayed because of the Buserelin which I’d started injecting. I don’t think normally I would have had to wait for the second period to start preparing for transfer, but I did have to because our PGT-A results weren’t back in time.

yes doing a medicated cycle, I just didn’t want to leave anything up to chance if I could help it and still wanted the meds to be responsible not me. With a natural cycle you have to temp and do LH tests etc and I also think I just wanted to throw everything possible at it.

Yeah I reckon October sounds realistic - you’re doing PGT too right? Like me, if yours comes back sooner you might be able to do it earlier but I think having October in mind as a realistic date is fairly accurate 🥰 also, a natural FET is a shorter process than medicated if you wanted to go down that route? Xxx

@Jecca88 Not overly sensitive at all. I avoided all friends with babies and even some friends and family just because they didn't understand what was going on. They did not get it at all and they try to say nice things but it's not helpful or wanted. That's why I found this forum so helpful because you can only understand it if you've experienced it. Much love 💕

@Hopeandfaith1990 - we do it the other way round, i prep the meds and he injects them and so far so good. I started the anti ovulation meds last night, needle is a little thicker and was sore for about an hour after.

How are the meds for prepping for transfer? Had another scan today, 20 follicles still there, 2 are a bit slower atm, but 18 looking good which i keep getting told is very good considering my AMH. I am feeling so bloated and tired and honestly crying a lot every day. I think i might book a holiday for september for a reset :)

Thanks @Deerdancer34 sending lots of love :)

Hi everyone, I hope you’re keeping well!

I’ve had my third month of negative digital OPKs and mid cycle brown spotting when I should be ovulating.

This all started when I started my protocol 😢 which is hydroxy daily and pred/progesterone from ovulation (which I now don’t know when it is)

I see dr shehata in his nhs clinic and their only response is to keep trying until next month which will be 5 months on the protocol. I’m feeling very deflated with it all.

Did anyone else experience these changes on the protocol? The bleeding is so triggering from the MC, feels like my body is failing me

Hi there, I am so sorry to hear this. I've heard a number of women talk about similar experiences in the Reproductive Immunology group on Facebook.

I had my Zoom results meeting with Dr Shehata yesterday, and he has also put me on 20mg of pred from ovulation (I don't have high NK cells but do have high thyroid peroxidase antibodies, and have had six losses). I also need to take thyroxine. I am quite worried that this is introducing too many drugs too early, and want to ask another RI for a second opinion.

Thank you. Is that the full name of the group, there are two. I’ll join now and ask. Xx

@SWMum9 I am so sorry to hear this, have they not explained any possible reasons for this? I feel they should be letting you know what it means etc, if it's happened to others. Sorry I can't offer any advice. Can you ask them again about it and why you are getting negative OPKs?

@Jecca88 A holiday is always a good idea, it's so much you are going through both emotionally and physically. I still hate that it's largely the women that have to go through so much and you can't share the load with your other half! Your numbers are sounding great 💖

@TammyinCork No harm in getting a 2nd opinion and would be interesting to compare. Its so hard all this because I think there's a certain amount of experimentation still.

UK Reproductive Immunology Support | Facebook

@Jecca88 Meds are okay, its 3 estrogen tablets a day, 1 injection of Lubion (progesterone) that I'm finding quite sting-y! And then of course the hydroxy, Pred & omeprazole and the Cyclogest pessaries, aspirin and all the supplements. Okay it sounds a lot typed out!

Your numbers sound great, I had different speeds of growth too. The Drs told me they kind of have to decide if they would rather keep pushing the slow growers and therefore potentially sacrifice some of the bigger ones, or have collection sooner and get the bigger ones but the smaller ones might not be mature. Its such a numbers game tbh and there is nothing you can do. I knew I went into collection with 20 follices but I genuinely had no idea how many to expect from the collection, its such a mindfuck and its really hard. The bloating was SO bad for me in the close run up to retrieval, and way worse than I'd expected. I was living in floaty dresses, couldn't bear any pressure on my stomach at all.

Peppermint tea was a lifesaver. A holiday sounds like such a good idea, I went to Spain between my retrieval and this FET and it was amazing. I was still injecting for my FET but it wasn't a huge deal.

This is so difficult, I'm sorry and its annoying that they aren't giving great advice or support. Could you try doing the superovulation with them? Or having scans around your suspected ovulation days to see if they can get a clearer idea of what's going on that way? xx

Heya - I had similar after I was put on hydroxy, went through to see Dr Edge and she did a saline scan which identified a uterine polyp, which I’ve now had removed, and switched me from utrogestan back to cyclogest (I was on cyclogest last year and then I think they switched lots of people to utrogestan as it is taken orally). Something from that combination of actions seems to have stopped the mid cycle spotting (was bleeding on and off from ovulation until my period which didn’t feel conducive to a successful pregnancy and also was just quite inconvenient). Haven’t yet managed to conceive and am also slightly concerned that my ovulation sticks are now much less dark than they were pre-hydroxy, and my initial temperature rise (before starting cyclogest) is quite low. Basically I wonder if it’s negatively impacting ovulation and that’s why I haven’t got pregnant in the last few months that I’ve been on it.

Anyway, that’s a long and rambling message and I’m not sure how helpful it is to you right now as feel I haven’t fully got to the bottom of the issue nor know exactly what stopped my spotting, but understand how frustrated you must be and sending solidarity. Definitely speak to Dr Edge (if you’re under CRP) as she was really understanding and helpful when I was having these issues.

xx

Hey girls hope you’re all okay 💖 I’m having a tough day mental health wise today. I feel like I’ve been pretty positive all the way through this IVF cycle but now we’re only 3 days before transfer I just feel so negative 😔 I feel like I’m scared of it not working but I’m also scared of it working because I feel like I’ll just be waiting to miscarry again 😩 sorry this is so depressing but haven’t really got anywhere else to put it. I think I’ve just really lost sight of the possibility that this will ever truly happen for us - like I can’t picture myself as a mum anymore, the vision has just been so ruined by infertility and recurrent loss 🥺 anyone else felt like this before? Xxx love to all

@Hopeandfaith1990 First of all sending you the biggest of hugs ever. It is not surprising you feel this way at all & totalllly normal. I felt completely broken, stuck in the deepest darkest pit ever, I can't even really describe it. Anyway, the only way I found to manage it was just to be really strict with myself and only think of one day at a time. If sht is going to happen, I'll have to deal with it then, I'll have no choice but there's no point making the early days sht too otherwise for me I just kept getting hugely overwhelmed. Its not really a method or very useful but it helped me slightly not get too swamped. Try not to think What Ifs or look to the future at the moment, just go with the process perhaps? And actually just talking about it, I think helps slightly too. You've got this 💪 Sending you so so much love 💖

Thank you for sharing. It’s really helpful to hear someone else’s experience. I’ve emailed the midwife and she said she will speak to the doctors Monday about my case. I know something is wrong. As it’s NHS I imagine anything will be slow so I’m going to ask about switching to the private CRP clinic.

@Hopeandfaith1990 sorry to hear you’re having a tough day. Miscarriage and struggling to conceive really takes any fun or excitement out of the situation. I totally feel you worrying about a loss. We have been through so much emotionally and physically. Sending you lots of love and manifesting that it will all work out x

Thank you for sharing. It’s really helpful to hear someone else’s experience. I’ve emailed the midwife and she said she will speak to the doctors Monday about my case. I know something is wrong. As it’s NHS I imagine anything will be slow so I’m going to ask about switching to the private CRP clinic.

@Hopeandfaith1990 sorry to hear you’re having a tough day. Miscarriage and struggling to conceive really takes any fun or excitement out of the situation. I totally feel you worrying about a loss. We have been through so much emotionally and physically. Sending you lots of love and manifesting that it will all work out x

Thank you @Deerdancer34 your message has really helped and you’re absolutely right. Worrying about it in advance just means being anxious twice if the worst does happen. I dragged myself out of the house and I’m making a kale salad for dinner to make myself feel less guilty about eating a whole pack of candy kittens yesterday 🤣 thank you again xx

@SWMum9thank you - I did a meditation from my IVF support app and am trying to manifest the manifesting now! Hope you’re ok xxx

Oh @Hopeandfaith1990 my love, im so sorry you're feeling this - i have had so many of those and when ever i get a positive pregnancy test i feel that doom and it does change. Each day at a time and you're doing everything you can to try and make this a success, these are good embryos and you're on the immune protocol - this is a completely different process for you with the IVF.
Had another Scan yesterday and i now have 26 follicles, 22 of them are a good size, but won't be triggering until Monday, so egg collection on weds. I feel like a whale and will take your advice and only wear floaty dresses from now on.

@SWMum9 sorry to hear you're having side effects from all the meds and that it has been a while for anything to happen. The only thing thats different from the CRP private is the intralipids and i think you could get them elsewhere? I know that if you do get pregnant the scans are also £300 each and consultations and thats every 2 weeks. Unless he thinks you need more than intralipids, then there are loads of other meds, but he wouldn't let me mix NHS and private and i had already gone down the private crp route before my referral came through for the NHS st helier. Plus you also have to pay for the meds and don't get them on nhs prescription. Just something to think about - i have spent £15K with CRP already.

@Hopeandfaith1990 Well done for getting out, I actually think that really helps too but it's very hard to make yourself in the first place! Gah don't feel guilty! Sounds rather a nice salad though 😄 Focus on a nice weekend 😉

@Jecca88 Sounding really good 😎

@SWMum9 See what they say before you switch! They really should be giving you answers...

@Hopeandfaith1990i am really sorry you are feeling like this. I know it is hard to feel positive about the whole process as we always have that fear of miscarrying but I will cross everything for you! Who knows ivf is a new process to your body so that a new beginning!😊
i am feeling really down as i am not even able to fall pregnant now I have all these medications. It took us 4 years to finally get the formula right to get pregnant ie letrozole plus Preseed and now I have all the immune treatments it doesn’t even work anymore.. I am feeling so defeated. I also keep getting false positive as my body is ultra slow at absorbing the trigger shot (still there at 14dpo)… so it is hard mentally…but I will carry on!

has anybody else had issues to get pregnant once on an immune protocol (pred and hydroxy)?

Thank you @Jecca88 it’s really good to hear others experiences too, this process can feel so isolating. I think cos we’ve not seen a positive test for a year as well that is adding to the anticipation / anxiety. In our series of losses I was quite confident with our conception rate but that confidence has just plummeted in the past year. You’re right I need to remember how different this whole process is, it’s giving us a whole new approach of trying to achieve this. Wow your numbers sound great but you must also be v bloated and uncomfortable. At least the end is in sight, well done lovely you’ve done so well. Have you taken the next two days off work?

Thanks @Deerdancer34 I’ve come to visit my parents and my mum is all about the tough love so that’s helped in a way 😂😂 hope you’re having a good weekend.

Thank you @CarpeDiem75 for your kind words. I’m sorry you’re feeling low too. That’s wild about the trigger - are you sure it’s not a pregnancy at 14dpo?? I struggled for a year post last MC on the protocol. I don’t necessarily think it’s to do with that, I think it’s just been crappy luck to be honest. But equally I have no idea. Sending love. X

@Deerdancer34 @Jecca88 thanks both. I’ve emailed my concerns in for the last two months and was just told to keep trying.. this month I said look I’m having heavy spotting again when I should be ovulating and I know something is wrong. The midwife said she will discuss with the doctors Monday and let me know. Fingers crossed. Would rather stay nhs care if I can for financial reasons but equally I don’t want the age gap between my first and second becoming even bigger but hey it is what it is x

@Deerdancer34 @Jecca88 thanks both. I’ve emailed my concerns in for the last two months and was just told to keep trying.. this month I said look I’m having heavy spotting again when I should be ovulating and I know something is wrong. The midwife said she will discuss with the doctors Monday and let me know. Fingers crossed. Would rather stay nhs care if I can for financial reasons but equally I don’t want the age gap between my first and second becoming even bigger but hey it is what it is x

@SWMum9sorry about your issues. I am under Dr S under the nhs too and under the same protocol as you but I do super ovulation privately. I have not had issues in my ovulation however I did notice that I have no symptoms after ovulation which is really weird for me as I always have breast tenderness or sensitivity after ovulation (Even if I am not pregnant!) which makes me worried that my hormones are not as strong as they should be during the luteal phase… I have a 6month follow up appointment in September and I will definitely ask them about it.

are you on letrozole? I know this can cause some spotting (I had this before but very very light)

Ah that’s helpful to know. No, not on Letrozole. I really felt hopeful for the protocol but I feel it’s only set us back as now I don’t know my cycle or body at all where as previously it was like clockwork with EWCM and then positive OPK. I don’t get either now.

Thanks @Deerdancer34 really hoping we can get something from this!

@Hopeandfaith1990 - keeping everything crossed for the next two weeks for you - I really want this to work for you.
so I only originally booked off the EC day but gonna book off the two days after I think. So nervous about that 5 day wait.

@SWMum9 hoping the midwives come back with something Monday. Have you been scanned at all in the last few months? Or any blood tests?