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

@pagey23 hey darling how did it go today?
no I am not doing Super Ovulation.
yes, lovely day today xx

@Rainbowchaser87 hello! Sorry for my late response - I’ve been so hectic!! It went ok with CRP but I ended up with a £1k bill for not a lot… consultation plus a blood test. Quite brutal!! We discussed the chemical I had and we will never know why it happened but we think it’s more of a chromosome issue rather than immune. My previous two miscarriages were slightly further down the line and I was on no immune support then. So I will stay on the protocol I’m on and not add hydroxy unless I get another chemical. The suggestion was to take a break so my hormones rebalance so I’m probably going to try naturally this month and not do SO or intralipids. It allows me to save some money too. Unsure whether I’ll take the meds post ovulation... maybe the progesterone?! Any thoughts? the bloods were because my previous ones from a year ago were out of date - those bloods showed I had to take an injection called adalimumab/humira - immune related stuff again.

are you thinking of trying SO? I didn’t for a while but I’m finding it less stressful - though it is more expensive!

hope everyone is well and loving all these positive stories!! So excited for you ladies! ❤️❤️❤️

Hi all!

Im new here and have found these pred threads incredibly useful. I am 35 y o with 1 LC (2.5yrs) since then have had 3 MCs - 2x 10 week MMCs (one stopped at 6.5 weeks other at 8.5) and a chemical at 5 weeks last month. It prompted me to see Dr S and had my bloods done this month, results to come back soon.

I wondered who else is currently seeing Mr S and how youve found it?
What different treatment protocols there are (Ive heard of the 'complex' one).
And which treatments mean you have to wait to try again? Im so desperate to start straight away.
Anything I can do to better advocate for myself when I get the results?

I am in such a dark place with all of this loss, whilst I do feel somewhat hopeful, I just feel miserable! Solidarity with you all, recurrent loss and fertility treatment is no joke 🩷

Oh and 1 more question re superovulation which I have seen a few of you have done before.

Why does this get suggested? I have a 28 daycycle and ovulate consistently day 12 to 14. Is there an added benefit of being put on superovulation?

I just want to be prepared for anything offered and also nervous as whilst I keep losing my babies, my body does at least seem to be regular in cycle and am scared of messing it up!

@pagey23 I'm not sure what to suggest, I'd be tempted to take the meds but then if they want your hormones to rebalance, maybe its best to take a break? 🤔

@Auberginesky Welcome and so sorry you have to be here. I'm so sorry for your losses, we're a very supportive bunch - literally been a lifesaver for me, so hopefully you can feel a bit of support here 💓
I'm not sure of all the different protocols but I can tell you what I followed if that's helpful?

The first time I needed to have 2x Humira injections because some of my NK cells were high - that meant I had to wait about 2 months before I was allowed to try - frustrating but Dr S is all about preparing your body for pregnancy... I then tried for 3 months with just medications (intralipids + Prednisolone) and then to help speed the process up they talked about Superovulation. You take letrozole Days 2-6 to produce up to 3 follicles, you then have a follow up scan to determine when to trigger and when to dtd. After years of losses it took a lot of stress away and basically boosts your chances as you usually produce just 1 follicle.
This time I didn't need Humira and have gone straight to Superovulation and doing intralipids, Prednisolone & Hydroxy.

I'm not sure how clear this is and tbh I still don't really understand all the NK cells etc. Do ask if you have more specific questions. Sending you so much love ❤️ It is such a dark place but the one thing that Dr S gave me was a plan and hope 💓

Hi all, I am new here! Hope it is ok for me to join. I started a post the other day on Hydroxychloroquine and was kindly sent a link to join here.
I am 38, history of Graves Disease (been in remission for 2 years) and now 3 losses in 3 years. I have one son who is 6, I saw Dr Shehata on NHS. I am on his protocol of Hydroxychloroquine, Cyclogest and Aspirin. All blood test were ‘normal’.
But he thinks some immune activity is causing the losses.
I had a positive pregnancy test 2 weeks ago but didn’t start his protocol until 2 days later. It wasn’t intentional it just happened that I was pregnant at the time I went to see him for the protocol but I didn’t know. I had hope but today did a test and was negative so I believe was a chemical pregnancy but the progesterone has been masking the bleeding. I haven’t had any bleeding yet.
I know it didn’t have time to get into my system properly so I can’t expect miracles but you know how it is. You get those lines and can’t help but dream. But realistically the medication needs time to settle in, so I shouldn’t be surprised this has also ended in loss.
In a way I am glad the test is negative today because it would have been worse to go to first scan in 2 weeks at 7 weeks to be told there is nothing there. After being hopeful due to no bleeding, oblivious that progesterone masks it and pregnancy still not progressing.
Thanks for reading, I know I should have expected it but I feel flat tonight and need to pick myself back up and carry on.
Sending love to you all and thanks for joining me to the thread x x x x

@Deerdancer34 thanks for sharing. It was really helpful to hear about your protocol and his rationale for super ov. Rooting for you you - rooting for all of us 🙏🩷 Ill let you know what my protocol ends up being

@Waitingforthesunshine24 thanks for sharing. How long does he usually want people on hydroxybefore getting pregnant? Im so sorry youre going through this and I can relate to the relief of seeing a negative pregnancy test before it all happens - kind of messed up really but knowledge is power 🥲 hang in there, I am in a constant black cloud these days and it is heavier immediately after my losses - its so so hard. One foot in front of the other 🩷

Hi there,
6-8 weeks I believe. Initially he told me to miss a cycle of trying so the medication had time to work. I should have expected this to happen it just still hurts when it does doesn’t it. Part of you still hopes it won’t happen.
The whole progesterone thing has fried my head a bit because now I know for sure no bleeding doesn’t mean everything is ok as the progesterone masks it. I would be interested how others manage this. I can’t imagine getting to the reassurance scan and being told there is nothing there. So do others do a test to see if they’re still pregnant or progression testing?
Sending you lots of love x x x

if anyone has experienced this, after stopping progesterone how long did it take for bleeding to start? X x I stopped mine day before yesterday x

Hi @TammyinCork hope your appt went well - have you had your embryo tested yet? Its exciting that you're getting close to transfer date! Are you doing the ERA? Fingers crossed for you xxx

@pagey23 Throwing in the progesterone for a natural cycle can't hurt - I hated 'wasting' a cycle so I'd go for it haha.

Hi @Auberginesky I'm so sorry for your losses and I hope you get your results / some answers soon.

Hi @Waitingforthesunshine24 I'm so sorry for your losses and that you might be going through another one now. I've been on progesterone for 2 MMCs and although it could have masked the bleeding, I also didn't start bleeding when I stopped it if that makes sense. Were your tests negative this morning? In my usual cycles, if I am taking progesterone and not pregnant then it usually takes 2-4 days for a bleed to start to begin a new cycle. Sending love xx

@Jecca88 How was / is Spain? I went to a dinner last night and a friend told me in person she was pregnant (!!!) Seems ridiculous to still find that triggering when I am also pregnant but there you go. How many weeks are you now?

@Deerdancer34 I chickened out of buying anything!! I am definitely getting more confident browsing in the baby section though AND I did have my husband buy me an expectant mother mothers day card haha. He's told a few more people now which is good. We are both making progress slowly but surely 😅 how are you?

How is everyone else? Love to all xx

I have started bleeding this afternoon so it’s all over rover and new cycle has begun. I am glad to be honest as tests being negative just wanted to get cracking. Did I read above right that you are pregnant? 🥰 congratulations and how many weeks etc? Hopefully you don’t find me too nosey and intrusive I am just interested in everyone journey but realise to read all of the thread I would probably be here all year 😂😂xx

Ahh I’m so sorry @Waitingforthesunshine24 ! This process is so hard! I totally empathise with just wanting to try again and I’m wishing you all the luck for this cycle.

thank you! Yes I’m currently 21+6 😌 furthest I’ve ever gotten after 1 ectopic, 2 MC and 2 MMC and 1 failed embryo transfer. The thread is epic, so please feel free to ask questions xxx

ohh that’s amazing so happy for you!!
what was your diagnosis and treatment plan? Xx

Thank you! ❤

So I was referred to Dr S via recurrent miscarriage at my NHS hospital so I only have the 'basic' protocol of Progesterone, Prednisolone, Hydroxy (although I didn't use it for this pregnancy) and then because I did IVF for this pregnancy I also had Fragmin (blood thinning) injections and Progesterone injections alongside a trigger shot pre-transfer. xx

Hey ladies,

Back from my week away in spain @TammyinCork we flew into Malaga and spent a few nights there and then onto Estepona along the coast.

Had such a nice time away - felt proper relaxed for what feels like the first time in forever. Could feel him move loads and reached the third trimester. I am 28.4 weeks now. Had a scan with the NHS yesterday and got a 3D image of his face which is incredible to see the features - i honestly cannot believe i am here, feels so unreal and i am so grateful.

How is everyone? welcome to the new ladies, sorry to see you here but we are super supportive and this has really been a lifeline for me.

@Hopeandfaith1990 you have made it to 22 weeks :) Hope you're mental health is ok, totally know what you mean when anyone announces their pregnancy if triggers me. I don't think I will never not. Recently i have been supporting a good friend after a miscarriage which has been pretty tough and i want to be there for her but its quite intense and she is really leaning on me.

How are you doing @Deerdancer34 ?

hey @Jecca88 so glad you had a great time and you might have inspired me to plan something similar! Did you look up/contact any hospitals in advance? Can’t believe you’re in the third trimester, how absolutely amazing 🤩 I’ve started to feel some movements too which is mostly lovely and reassuring although of course I’m panicking if it goes quiet haha.

3D scan sounds amazing. Is that standard on the NHS?

Thanks re mental health. Generally feeling okay at the moment! Still have intrusive thoughts but trying to accept that it’s not reality lol.

So tough re the MC friend. I had a similar situation with a friend with an ectopic. I was happy to support her of course but it is triggering as I think you naturally relive your own experiences.

I’m 22+2 today. Coming up to Easter holiday from school which I’m looking forward too.

have you bought anything yet @Jecca88 or done any house prep? Husband wants to do a bit in our school holiday as it’s our biggest chunk of time but I’m still scared! love to all xx

Hey @Hopeandfaith1990 yes you should look at booking something. I got the all clear from midwife and fit to fly letter. I did look at hospitals for sanity and got the GHIC card - as maternity care is free in Europe. Totally know what you mean about movements, tbh - the consistency has only really just started - so don't fret or track them till 28 weeks -32 weeks.

We have been given loads of stuff from Sister in Law, my mum kept loads from my nieces and nephews - the only things we need to buy are the buggy and my husbands work have very kindly offered to buy it for us. I know what room the baby will be in - but still holding off buying anything yet, but we may decorate it neutrally next month. Do you have people that will donate stuff to you? it made me feel a bit better rather than purchasing myself. Althought opening the boxes and going through baby clothes is kinda mad. We had our first gift from my husbands boss' wife on holiday - some little newborn babygrows and it just so sweet to be in the position that people are buying us stuff for once, but also there is this added pressure that people assume it will all go right. Still can't get used to the idea we are having a baby.

That is so lovely @Jecca88 about your husbands work and people giving things to you ❤️ but I also totally get your thought about the assumptions. PAL just gives you such a different perspective. Yes people have offered things to us too, I’ve basically said I’ll take anything hah as I agree it feels less intimidating than going to a shop and buying loads. its all quite bittersweet isn’t it.

Thank you for the tip re GHIC card, I didn’t know that.

Forgot to say - I have my first ever appt with Dr S next week! At least that’s who it’s with on my appointment record, not sure if it’ll actually be him. Feels like I’ll be meeting a celebrity 🤣

How did the GD test go @Jecca88? Xx

@Hopeandfaith1990 that's good - about donations - always best to recycle too and saves you money.

Where will you look at going? might even be nice to do a staycation not too far?

I am seeing Dr S on Monday too - hopefully to be signed off from the clinic. But haven't seen him for over two years.

Got my GD on friday - not looking forward to it.

@Hopeandfaith1990 Aww an expectant Mother's Day card, I love that 🥹
@Jecca88 I'm so pleased you had a lovely relaxing holiday!! Ughh I hated the GD test, apparently they used to use lucozade, would much rather have had that!

Really lovely you are both feeling movements 🥰 so special! When are you both actually due!? Tbh I only bought the big stuff 2 months before (purely because I got stuff in a summer sale!) and then I barely bought any clothes because you don't know how big baby will be & you'll be gifted stuff too. I got 1 pack of 0-3months babygrows & then a week before I was due I got some 'Up to 1 month' babygrows off Vinted (Vinted is incredible for baby stuff- highly recommend!)

I'm on my 8th Cycle...got that hope again but feel nervous... Going to see my parents in Wales on Sunday in hope its a good distraction! Lots of love to all 💓

@Jecca88 glad you enjoyed Spain, Estepona is a beautiful place, we go every yearas I am half Spanish.

@Hopeandfaith1990 hang in there, its ok to feel terrified after all youve been through. My mental health is honestly in tatters these days. My best friend just told me she is 6 weeks preg. She wont be doing an early scan and will wait til the 12 week scan. Feelings so sad as my last miscarriage was due 3-4 weeks ahrad of her. Also so envious (but simultaneously happy) that she is so un worried by everything. Im probably more anxious than she is about her pregnancy!

@Deerdancer34 so sorry about your neg test and feeling like crap on the steroids. Any tips for managing the synptoms? I start my prednisone and progesterone tomorrow. Do you know why Dr S prefers tablets to pessaries by any chance? And do you have any insomnia?

So update from me. Just had 2nd appt with Dr S. Confirmed high NK cell activity. Treatment is prednisone, progesterone tablets and intralipid infusions. I had 1 infusion (bloody expensive.. dies anyone know how robust the evidence is because at 400 a pop its eyewatering). I start the progesterone and prednisone tomorrow as I ovulate and can try asap. Im so worried about the potential insomnia, mood swings and weight gain. Is it really that bad?? Any tips to feel more human during these meds?

Love to all

@Waitingforthesunshine24 and how are you getting on? Hope youre managing to hold your head above the water 🫶

@Auberginesky I would say take the Prednisolone as early as possible to help with insomnia and have some good podcasts if you do wake up or have trouble falling asleep. I haven't had a problem with insomnia this time but Days 7-10, I often feel quite paranoid/heart beating fast etc - so try and be relaxed as possible, I often go on a brisk walk to help - I'm really bad if I've been cooped up! I also tell my husband to not wind me up during the last few days 🤣 Weight gain, may not affect you, when I took pred the very first time I blew up like a balloon but the 2nd time round and this time round I've been fine. I'd try not to worry too much about symptoms because they may not happen!
I think they give Utrogestan tablets now, probably because most people prefer tablets. I've gone back to Cyclogest pessaries for this cycle because I'm wondering if the Utrogestan made me feel quite sick, I'll let you know next week if I feel less sick this time!
I don't know what to say about intralipids...I can't help but feel a bit dubious about them but then I'm kinda scared to try without...I asked if I had to do them and the answer is 'We wouldn't advise treatment without them' - just guilt trips you in my opinion!
Good luck for this cycle 🤞💪🤗 xx

@Auberginesky All the best with your treatment! I think Dr S is very good at what he does when patients have high or active NK cells. I got a second opinion, however, as I don't have an issue with mine, and did a retest with Dr Thum. We spoke last Saturday and he said I only need 5mg prednisolone from Day 10 of my cycle before the transfer, rather than 20mg as Dr Edge said, and no intralipids! Which is a relief, as I am intolerant of soya and allergic to peanuts! (I was on prednisolone for two natural cycles and did not get pregnant, whereas I always got pregnant quickly before). And I agree with @Deerdancer34 to take it first thing in the morning.

@Jecca88 How fabulous - Estepona is just gorgeous! And it is so special to feel the movements! Hope your GD test went well.

@Hopeandfaith1990 Yes, so much better to recycle and use second-hand stuff, and wishing you well for your consultation with Dr S :-)

@Deerdancer34 Enjoy Wales... A beautiful place to be! Wishing you so well for the next cycle.

@Waitingforthesunshine24 That sounds like a good plan. Dr S is really good on most immune issues, but unfortunately, the protocol can be too strong for others.

Unfortunately, it was bad news for us on this second IVF cycle: the 1 blastocyst tested had Trisomy 7 :-( We will be getting genetic counselling through the IVF clinic. Has anyone come across this specific trisomy before?

I have gotten the medication needed to do an ERA test (which is pretty much the same medication needed for transfer, so it's like a mock transfer). ERA test is in April and transfer of the euploid should be scheduled for May, as long as there are no issues... Very nerve-racking!

Last Saturday's consultation with Dr Thum went very well (I went to London to do NK cell and thyroid re-tests at the Lister on 17th March). He suggested 5mg of prednisolone on Day 10 of my cycle before the transfer, and no intralipids (which were prescribed by Dr Edge, and which I was concerned I might be allergic to). It is a much more moderate protocol, as I don't have an issue with NK cells (and didn't last July when I did the first tests with Dr Shehata / Dr Edge).

@pagey23 sorry love for my late reply! I have been on SO for like 7 cycles last year…It didn’t work for me but I think it was because of steroids l…they were too strong for me and that’s why I am on hydrox now. I am enjoying freedom from scans and intralipids tbh!
because of the injection u had u needed to take a month off from ttc right? Are u back on ttc now? Xx