Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

Hello everyone, I hope you’re all doing well. I know this time of year can be very hard. I haven’t had any losses at Christmas thankfully but I always think how special it would be if pregnant or with a child, and feel sad another year has gone by and I’m still stuck in this situation.

I had several days last week of EWCM and very nearly positive OPKs, so wasn’t sure if I ovulated, only to then have a strong positive OPK a few days after on CD25 (so didn’t miss intralipids). I’ve been doing acupuncture for 2 months now in the hope of bringing my ovulation forward but it hasn’t worked, which is frustrating. Now in the TWW and having insomnia from the pred, and feeling anxious about testing already even though I’m only 2DPO. I’m also waiting to hear if I got a new position I interviewed for at work too, and the fear of being rejected from that and getting a BFN at the same time is making me feel depressed!

How’s everyone getting on? @VenusStarr how are your IVF preparations coming? Will you start egg collection in January? Well done for paying off a big chunk, I understand how scary that is. How are you feeling about it?

@Newbeginnings22023 that's a difficult situation to be in, deciding whether to take the Humira and risk reactivating TB. I think it’s a great idea to repeat your blood tests though and get a better idea about if your TNF alpha is still high to decide what to do. Did you get your results yet? I didn’t have any side effects at all from Humira, but appreciate your case is more complex with also having to take antibiotics.

@clhiu how are you doing? I’m really sorry you missed a cycle, that’s very frustrating. Are your cycles a regular length? Hopefully it won’t be too long before you get to try again.

xx

Hi @Lily1990 nice to hear from you. Thanks for acknowledging the pains of infertility over the Christmas period, you couldn’t have put it better. I did have a loss a couple of week before Christmas 2 years ago, it was my second miscarriage a first chemical, it was the weekend we celebrated fake Xmas with dh family and my brother in law and his girlfriend cane to stay at ours. I tested positive in the morning, a clear positive so I was over the moon to have fallen pregnant again quite easily after the first MC. 24 hours later I started bleeding and I knew it was over, the worst part was having to hide it in front of everyone else and try to enjoy the celebrations, it was so tough. But that experience aside, you hit the nail on the head when you said that it’s the feeling that at some point one might have imagined having their baby at this time or in my case I’d envisaged sharing the happy news with the family a couple of times like a Xmas present, but that never came to be and it hurts. This time last year I just did my only ever IVF round and was waiting for the PGT-A test results.

Sorry to hear about the effects of the Pred, I really hated it, the insomnia and palpitations on top of the PT anxiety it’s a lot. I hope you get at least one bit of good news, either the job or a BFP, but really both because you deserve it.

I’m ok thank you. Just waiting for AF next week so we can go back ti trying again. I definitely missed my fertile window so that I didn’t bother with any Cyclogest or Pred this month and even went ahead with a smear test a few days ago. Already stressing about next month though and brother in law and gr are coming to stay around the start of my fertile window and we have a really noisily bed so worried that we won’t be able to have intercourse and miss again 🙈

Hi @Lily1990 thanks so much for your thoughtful message. Keeping everything crossed for you this month, fertility and job wise ❤️

Incidentally, I just received the blood results and thankfully, my TNF alpha levels dropped to high normal, so within the range but at the very end. Last time it was way above the limit, so I really don’t think I’ll need Humira based on my new results, I hope Dr S agrees but at any rate I’ll push back. He seems reasonable enough though! So that’s good news at least for now.

Hi @clhiu really sorry to hear about your chemical pregnancy 2 years ago, that must’ve been really hard with people around too. Hope you get to DTD next month, I know how stressful it can be with people there, but hopefully you’ll make it work.

Hope everyone else is ok xx

Hi @Lily1990 good to hear from you.
This time of year is so weird, it's our 6th Christmas ttc. Reflecting on some Christmases I've has, I feel ok about this one. We've got our tree up and even done some outside lights. I don't feel christmassy as such but I'm not dreading it. We've got no real plans which is helping.
I'm sorry acupuncture didn't help with ovulation. I've just restarted but the time of year means I won't get it during stims but am doing one on Monday and she gives me little ear buds which I think help me sleep.

I'm sorry you've had a loss over Christmas @clhiu ❤️ we got cytogenetic test results the week before Christmas and that was hard. I hope you can get some ttc in over your next fertile period 🙏

That's great news about your tnf levels @Newbeginnings22023 what else have you been taking? Glad you don't have to take humira now, hopefully Dr S agrees, I'm sure he will.
What's your next steps now then?

I got my meds delivered today and I ovulated a couple of days ago, so countdown to starting is on 😬 feeling quite anxious as it's getting closer now. Xx

Hello @VenusStarr thank you, I felt really good after seeing the results :) I feel maybe being on his protocol helped bring my levels down (so prednisone, intralipids etc.). I’ve been on the complex plan for a couple of months.

My next step is a follow up with him on Wednesday to see what he says about Humira then an immune plan for my next transfer in the new year. He hasn’t said whether my protocol should change yet, hopefully he’ll be clearer on this on Wednesday. He also said all these chemicals (I’ve had 4 now) can’t be linked to chromosome abnormalities, contrary to what I thought.

Good news about your meds. How do you feel about it all? Are you starting with your next cycle then? Xx

Thank you @Newbeginnings22023 Dr S doesn't feel like our issues are chromosomal either. I've had 2 chemicals and 4 MMCs (2 were tested as healthy).
I hope you get a plan you're comfortable with in Wednesday, let us know 💕

I'm very anxious right now. I'm 4dpo, so starting stims next cycle day 2, so really not long now. I keep thinking I'm forgetting something, but not sure what. Hopefully I'll settle once we get going.

Hope everyone else is doing ok? Xx

Hi @VenusStarr I also had an MMC two years ago but we didn’t test it (no one gave us any guidance on what to do with it, so frustrating). Really sorry for your losses. I think as painful as it is, somehow knowing they’re not all due to chromosomal abnormalities provides some relief. Thank you ❤️ I’ll keep you posted after Wednesday.

All the best of luck with your next cycle ❤️ it can be overwhelming at first, but having just completed a fresh cycle in November, I will say that it gets easier once you start and adapt to the routine xx

Hope everything else is doing ok xx

@VenusStarr hang in there, it’s a stressful time and for sure overwhelming, but you’re giving yourself the best chance and I’ll be thinking of you the coming weeks and wish you the absolute best with this cycle ❤️

Indeed albeit terribly frustrating on one hand, knowing you don’t appear to have a chromosome problem is a huge box ticked on the positive outcome card x

Hi @clhiu I completely agree, I’ve also imagined sharing news with family like a Xmas present or having a baby at this time. In fact I just realised with a loss I had in April, the due date was a couple of days ago (although I never really thought I would get there at the time). I’m really sorry about your chemical pregnancy before Christmas 2 years ago, that must have been so so hard.

Although frustrating you missed your fertile window, it must have been nice to miss Cyclogest and Pred this month! I’m starting to hate Cyclogest too – it gives me cysts on my chin and I hate putting them up there! Hmm maybe put the tv on / some music when your brother in law and gf stay at the start of your next fertile window, but if they hear you, so be it!

@Newbeginnings22023 so pleased your TNF alpha levels had dropped to high normal, that is brilliant and also shows it was a great decision to repeat before going straight to Humira. Hope your follow up goes well tomorrow, let us know how it goes. I’ve also had 4 chemicals and he said the same to me about it being unlikely to be chromosomal – are you on hydroxy as well as Pred?

@VenusStarr I’m glad you’re feeling ok about this Christmas, but understand starting IVF is very anxiety provoking and overwhelming. Hopefully as @Newbeginnings22023 says once you start and adapt to the routine, it gets easier. Hopefully the acupuncture will help with relaxation too, as well as having some time off over Christmas. I will also likely be in this position in Feb so hopefully you can share your advice with me then!

I did actually get the job I applied for 😊 so I’m very happy about that, and feeling like it’s not the end of the world if I get a BFN in a couple of days. I also had my first ever NHS recurrent miscarriage appt with St Mary’s, although all the tests they said they’d run on me are things I’ve already had (thyroid, lupus, thromobophilia screen, vitamin D) so can’t imagine it will be helpful. But I thought it would be good for me to get in the system anyway.

Hope everyone else is doing well xx

Hi all. I can’t remember if I’ve posted on this thread recently, but I’m back with Mr S to attempt baby 3, having had 2 on his protocol (pred).

Interestingly he repeated all the blood tests and my NK cells were normal but TNF alpha was high, so I’ve got my second humira jab today. And then he’s recommended sticking to the pred protocol when we try despite the NK results, which I’m fine with as after 4mcs I don’t want to leave it to chance in case my levels fluctuate again.

I just wanted to check for anyone who’s had the humira phase - I was told to get the repeat bloods done 2 weeks afterwards…I’m assuming it doesn’t matter if it’s 2.5-3 weeks? Just not sure when I can fit it in! Would ideally get it done next week but I guess 8 days wouldn’t be a long enough gap?

Also, did anyone try other methods to reduce TNF alpha? I’ve been taking turmeric supplements as I read that can help. My level was 37 - not sure if that’s massively high or not.

Best of luck to everyone - it’s not an easy time of year.

@Ifyouknowyouknowyouknow I think they said it had to a minimum of 2 weeks so should be fine with 2.5/3 weeks. Hope the first dose works for you getting it down.

Hi @Lily1990 yes I’m on hydroxy as well as pred, don’t love it or hate it tbh. Not enjoying the slight hair loss happening! Dr S is happy for me to forego the humira for now but has suggested we add GCSF injections to my protocol.

So I have two questions:

A) has anyone tried GCSF? Any notable side effects? Has it helped anyone? He’s saying it’s my decision whether we add it or not in my next attempt.

B) for FETs do you start pred, intralipids etc before transfer, at the time of transfer, or at a positive pregnancy test? Very confused about this because my protocol says at positive preg test although my fresh transfer said a few days before transfer. Have asked the nurses too but hoping to hear from others here.

Congratulations on getting the job @Lily1990! Excellent news before Xmas :) as for the NHS recurrent miscarriage clinic, as you say at least you’ll be in their system which means you have that extra support if you need it. They’ll offer you additional scans etc.

@Ifyouknowyouknowyouknow I can’t really answer your question on reducing TNF alpha levels but I did ask Dr S this question and he said it fluctuates every couple of months. 37 is high as per the range he provides, the limit is 31. Hope this helps xx

Congratulations on the job @Lily1990 fab news! 🥳

@Newbeginnings22023 gcsf is in my protocol, not tried in pregnancy yet but have taken it a few times wgen we tried superovulation. The first one makes me feel quite rough, almost fluey, achey type symptoms but it does settle and its not teeeible, I just feel off.
I fo know of a few people who have had success with it. So I do feel like if we get a good embryo, good lining and all the conditions are right, it could help me. Its so hard to know though.

In my FET (which got me pregnant) I did intralipids 6 days before and pred 5 days before. I thought that was standard to be honest. But better to check. Do you take fragmin in ivf too? I think that's something like 7-10 days before transfer.

Thank you @clhiu hope you're OK, is af due this week?

I'm 7dpo today and feel shattered. Break up tomorrow and it can't come soon enough 😊 x

Thanks so much @VenusStarr for your helpful responses, as always ❤️ I have consented to the use of GCSF now and will see what happens. Doesn’t necessarily mean I’ll try it though, I’ll see how I feel come January!

The FET sheet they sent me was very confusing but they have now explained that those meds (pred etc) need to be taken 5 days before transfer. And yes intralipids within a week of the transfer date. So thank you for pointing that out as I felt like I was going mad, stared at the sheet for ages!

I take fragmin too because I have APS. So much medication!

Really hope it works out for us in the new year. How are you feeling? Xx

You're welcome 😊 @Newbeginnings22023 (sorry about all my spelling mistakes! 😅)

I do worry about oversuppresssion on the immune meds, but when I asked Dr S after my MMC he said definitely not because the protocol should've worked. It's a lot to remember and feeling bruised and sore, whilst rattling with all the meds - it's a lot to remember and schedule. I hate fragmin, the needle is blunt! So I'm going to do clexane, but the bruises are pretty spectacularly!
I'm going to wait until transfer is definitely scheduled because when I had cancelled FETs last year, I had intralipids for nothing and counting all the pennies at the moment!

I really hope we get some positive news 🙏 I keep flitting from this could work out but my brain quickly switches back to it probably won't work. It's exhausting.

I'm off work now until 3 January, hope I can switch off these next few days. Feeling quite anxious so going to try and keep busy today. Getting my hair cut this afternoon.

Lots of love to everyone 💕

How funny @VenusStarr I’ve been thinking about switching to Clexane as well. I agree that it causes a lot of bruising but I always ice the area before and after injecting to minimise this!
I also wasted money last time on intralipids when I should’ve waited for the repeat HCG blood result. All good lessons!

That’s interesting about the oversuppression. It’s really hard to know without trying and seeing what works.

It’s good to stay positive, it’ll be a new year so let’s hope for good outcomes 🙏🏼

Enjoy your afternoon at the hairdresser’s and your time off over Xmas and the new year. I’m off until 4 January which will be good for me too.

Hope everyone has a relaxing time off over Christmas and New Year. Here’s to a better year! Xxx

Thanks so much for the job congrats @Newbeginnings22023 and @VenusStarr 😊

In a surprising turn of events I’ve ended up testing positive. I had to get emergency intralipids at Sutton Coldfield because we were staying with family up north and due to go on holiday the following day! (It was only £200 and took 20 mins, so much better than CRP!) My tests are developing much better than with my last chemical, where it was super faint at 11DPO but it’s quite clear now at 11DPO. But I’ve still been here 5 times before with no baby to show for it so feel I can’t let myself be positive. 4 of my losses have been around 20-23 DPO so the next 10-14 days will be crucial I think.

We are on holiday for the next couple of weeks and our last loss happened on holiday too, so feeling afraid another holiday will be consumed by loss! But also very grateful to have tested positive right now and reminding myself I’m on a new protocol with more immunosuppression than last time.

Hope everyone is doing well. @VenusStarr i feel exactly the same with my brain flitting between it could work out to quickly reminding myself it probably won’t. It’s a self protection mechanism but I agree it’s exhausting. I hope you have some relaxing days off and can treat and look after yourself, you really deserve it.

@Newbeginnings22023 I’ve heard of people having success with GCSF too, I think it might be more regularly used in the US too for reproductive immunology? There is a ‘reproductive immunology’ Facebook group you could join and search for posts by people using it perhaps. I find a change in protocol can be helpful psychologically (to feel you’re doing something different next time) but then it also can be scary adding another medication when we’re on so many already. It’s good you’ve got until January to mull it over and see how you feel. Hope you have a lovely relaxing break.

@clhiu hope you are doing well too, and same for everyone else. Really hope 2024 will be our year 🙏❤️

Hi everyone, happy Christmas Eve, I hope you can all switch off from ttc and enjoy the next few days.. easier said than done!!

I have a question for you if its ok? I've been seen by Dr Thum at the Lister after 6 miscarriages and he found I have elevated cytokines and cytotoxicity. He's said for me 25mg pred OR intralipids in pregnancy and that these would be equally effective.

I was leaning towards pred but the side effects look a bit brutal for what would be hopefully 12 weeks. Would anyone know what an intralipids only protocol looks like? Has anyone tried it?

Hi @Lily1990 whispering congratulations on your BFP! Please stick little one ❤️
I know what you mean about having more hope with a different protocol. I know it’s easy to assume each pregnancy will fail but we have to stay positive. Many women had their happy ending so our time will come too ❤️

Thanks so much for your FB group suggestion, will have a look. I’ve been looking at medical journals as well, all looks promising especially for women with endometriosis, a condition I’ve got.

Hope you have a relaxing break too xx

Hi @RumandSpinach I’ve never had intralipids only before, it’s been part of a wider protocol. I like pred though because for the first time ever, despite it being another loss, I didn’t have the usual chills and flu like symptoms I get after an embryo transfer (which psychologically made me feel like my body is reacting badly/rejecting the embryo), so for me that’s been a real positive. All the best to you x

Hope everyone has a relaxing, peaceful holiday xx

@Lily1990 ❤️ gentle congratulations. I'm pleased things are looking to be progressing as they should. I really hope that you can enjoy your break. I'm glad you managed to get intralipids in. What's your other medication? I hope you have a peaceful few weeks xx

@RumandSpinach I think Dr S prescribes humira for cytokines. But I've not needed that. I am on everything else though - pred, intralipids, hydroxychloroquine (which I think can also be used for cytokines but not 100% sure on that). I don't find pred side effects too bad - although my moonface kicks in almost straight away. Intralipids are immune modulators but pred is a suppressant - what are your nk cells like? Mine are normal count but very overactive so I need the suppression I think.

@clhiu how are you?

Hope everyone is doing ok ❤️❤️ @Ems123456789 @Deerdancer34 @HopefulH @KtAgs @MotherOfShihTzus @Privatemedical246 @comingsoon786110 @star2022 @Danni8 don't feel like you have to reply, but sending love to everyone xx

Realised I hadn't tagged you @Newbeginnings22023 I hope you have a peaceful Christmas 💕

@Lily1990 that’s great news although I absolutely get the need to feel cautious at this stage with our kind of history, but I really hope this is the one for you ❤️. And congratulations on your job success too 🙌. To think you thought you could have been in for an unsuccessful application and BFN at the same time and the opposite happened, you must feel so great about it all 😍
I’m really intrigued about you being able to get intralipids last minute elsewhere. May I ask you if one can literally just find a clinic that does them, call them and have them without a consultation or tests? Or did you have to show the plan recommended by CRP and they were happy to administer? Would love to know if this is an option for me as if I do fall pregnant again, I would want to get intralipids, but I don’t want to pay for the full package with CRP and go through the motion of having to have a new consultation etc…My ivf clinic who prescribed them for an FET, would not do them in a natural cycle.

@VenusStarr and @Lily1990 I must say I’m struggling quite a bit today. I was feeling quite relaxed and optimistic about trying this month and I didn’t even get too upset that we missed the chance to try last month, then last night I read a post on the infertility board that broke me. It was from a 46yo woman who became pregnant for the first time at 42 and had 3 consecutive losses then wasn’t able to conceive at all for 4 years and just tried IVF just to be told at her baseline scan that she has no follicles at all and that at her age is virtually impossible to get pregnant. Of course I knew this already and I already know at my age is also virtually impossible to have a healthy baby, but something about reading it in that post in that moment really touched a nerve. I realised I’ll be 44 in less than 2 months and 3 pregnancies at 41 and 2 at 42 didn’t work so why would one work at 43-44, who am I trying to kid. And all these success stories are from people who seem to be able to keep investing money in ivf or expensive fertility treatment which I do not have. My ivf clinic and CRP won’t offer me any kind of support unless I go for the whole package and I don’t even know if I can still get help from my NHS consultant as my last consultation was over a year ago 😞. I feel really alone and hopeless today, really sorry if this isn’t what people want to read on Xmas eve, I wish I wasn’t feeling like this but here you go.

My personal feeings and issues aside, I wish you all a lovely Xmas break xxx

I'm really sorry you're feeling this way @clhiu ❤️ it's bloody hard. This time of year is tough. I know we can't make things better but we're all here and understand, you are not alone x

I think @Lily1990 might be talking about Cherish in Sutton Coldfield. We went there for dh's sperm analysis tests. I don't think you'd need a prescription (but not certain). Could you show your crp protocol / results if they need evidence? Are you able to get cyclogest and pred prescribed?

I hope you are ok and that you can find some peace and moments of joy in the coming days. Be gentle with yourself ❤️❤️

@VenusStarr does the moonface go away? It feels ridiculous to be thinking about my looks after so many losses but there you go. I remember after my last miscarriage I was 4kg up and that added a layer of shit to the whole traumatic experience.

My NK count is 225 million and my cd69 activation marker is well within normal not that I understand any of that

Sorry for the delay @RumandSpinach i think pred has changed my face shape. The moonface does go away (mine took a while), but my definition in my cheeks and chin are different since taking pred.

Did your Dr give you a breakdown of the meds effectiveness? That might help you decide. I think pred is the more typical treatment for highnk cells though.

My period arrived today, bang on time, so ivf cycle 1 has officially started 😬

Hope everyone is doing ok, we had a very quiet Christmas and ignored it mostly. I hope it was manageable for you all 💕 xx