Immune/NK cells pred thread #31

@Newbeginnings22023 @VenusStarr thanks so much for your advice about IVF and checking progesterone, it's super helpful. I am going to ask my IVF clinic to check my progesterone before transfer and prescribe Lubion too. And maybe I'll do a hysteroscopy / laparoscopy if we have another loss. Even though we have already spent thousands on tests it still feels like a minefield with potential causes we haven't explored yet!

@Newbeginnings22023 I'm glad the bleeding started and it's a relief for you, as awful as it is. I completely understand just wanting it to be over so you can move on. Hope you're doing ok and feeling positive.

@VenusStarr I'm sorry you're feeling anxious and panicky, I agree it's completely overwhelming. It's such a big thing to go through so it's understandable you want to feel confident that you are in safe hands and being listened to. It's good you raised these concerns now and hopefully your clinic will be accommodating and reassuring.

@RumandSpinach welcome and I'm really sorry about your miscarriages, it's rough. I'm afraid I don't know much about DNA frag except that Impryl is recommended. xx

@VenusStarr sorry to hear about your panic episode this morning, I hope you’re feeling better now. It can all be extremely overwhelming.

I can’t say if what I did helped, but I took the supplements you did + Impryl to improve my AMH + DHEA 50mg/day for the 3 months before my IVF cycle. I ended up with the same number of eggs retrieved (11) and embryos (3) as my IVF cycle 2 years ago, but I’ll never know whether it’s because of the supplements I took, and at the end of the day, the most important factor is embryo quality/normality.

I’m ok thank you, I finally started bleeding today which is a relief, I just want this to be over.

@RumandSpinach welcome and sorry to hear about your previous miscarriages. My husband has high DNA frag as well so he was on Impryl to bring this down. We haven’t tested it since but all fertility doctors have said Impryl can bring down the fragmentation. Hope this helps.

Love to all ❤️

Hi all, can I join? I've been following the thread and think I've found my people 🙃❤️

I've had 6 miscarriages and I have one kid DS4 who was lucky pregnancy #4. The NHS haven't helped beyond giving me progesterone and enoxaparin, so we've seen Dr Thum at the lister who found I have high cytotoxicity and a high th1/th2 ratio, so I'm starting 25mg pred from a bfp.

I felt quite optimistic about all that, until we found that DH's dna fragmentation is 36% 😩 he hasn't got a varicocele and we're doing a sperm culture but I doubt he does have an underlying infection so it will come down to 3 months of supplements and very clean living to get it down.

Part of me thinks fuck it, let's ttc now, Dr Thum thought the immune response was the bigger problem. Then I think we could wait, then I also think we should do IVF immediately.

I don't know if anyone has any dna frag wisdom? Everything online seems related to IVF and my head is in a spin

Hi @VenusStarr best of luck with it all ❤️ sounds sensible to use Cyclogest while you have some anyway especially since you’ve bled before OTD in the past.

Have they suggested any supplements for you to improve egg quality/your chances? You’ve got some time to do this since you’re doing back to back cycles.

In terms of a double transfer, I think you can decide this depending on how many embryos you get in total, but as you say, because of our immune issues I’d worry about ruining the chances because we have so many variables.

I know it’s hard to stay positive but things have been moving in the right direction, so there’s lots to be hopeful about. I’ve also been advised to stick to the Mediterranean diet with lots of protein in the months leading up to IVF.

Thanks so much for your wishes ❤️ I’ll see how the weekend goes xx

@Lily1990 thanks for your kind words. I’m in this dreaded phase of waiting for the bleeding to start. I stopped the progesterone 2 days ago and they said to expect a bleed within one week. This one will be especially heavy because it’s following a fresh cycle, almost two months of hormones piled up.

I didn’t test the embryos because my doctor doesn’t really believe in it. She says it can increase the chances of a live birth but it’s equally good to give every embryo a chance. This is why I’m expecting some of my transfers to fail unfortunately. Such a brutal process.

I can see you’re planning to do PGTA which is what I would’ve done too. Untested embryos can work too though, it’s really hard to decide. I’ve seen women at my clinic do a fresh transfer then PGTA for FETs, so it’s worth a try.

I think you should definitely push for progesterone testing especially since you think it may have affected your chances before. I had to push for this too last year after a failed fresh transfer, and they ended up testing me a day before my FET.

For my FETs I’ve always had 2 Cyclogests and 2 Lubion injections daily. Lubion is expensive but I’ve found it to be effective in terms of sustaining good levels of progesterone.

I actually had a hysteroscopy done privately 2 years ago, but I was diagnosed with endo, so this was necessary for me. If you have any questions on this let me know xx

@Newbeginnings22023 I'm so sorry about your loss, that is heartbreaking and must have been so stressful being in limbo too. I hope you're doing as ok as possible and being well looked after. Did you PGTA test the other embryos that were created from your IVF cycle, which you'll use for the FET?

@VenusStarr yep we are planning to go ahead with our first IVF cycle in Feb if not conceived before then. I've never had any losses tested so it will be a useful diagnostic test to see the quality of the embryos and hopefully do PGTA if we have enough good quality ones. The nurse said they could potentially do a fresh transfer of a low quality embryo (which couldn't be used for PGTA) so that will be something to consider at the time. In some ways it seems unintuitive to intentionally transfer a low quality embryo but at the same time it can sometimes work so maybe worth a go if I'm brave enough to face another likely loss! I'm terrified about IVF too. It feels likes the stakes are much higher and I'm scared I'll lose a PGTA tested embryo on the full immunology treatment, which will be devastating.

That's fab about your AMH, amazing it has doubled, so pleased for you! It's a great sign going into IVF.

@VenusStarr @Newbeginnings22023 I'm also worried about my progesterone as my luteal phase is super short without Cyclogest (8 days) and I've had low progesterone in pregnancy when on 2 x Cyclogests (although unclear if that was due to impending miscarriage). My IVF clinic (Care) said they don't test progesterone before and after transfer but maybe I should push for this and explain my history? Is Lubion something that boosts progesterone?

@clhiu argh sorry about your BFN. But I agree that 8DPO is super early and I don't want to get your hopes up, but could the spotting be implantation bleeding? Keeping my fingers crossed for you, but if it's truly a BFN hope AF arrives soon as I know the limbo period between BFN and AF is the worst.

I've been reading about silent endo and how it can be a common cause of recurrent MCs, feel I want a hysteroscopy to check for it! @VenusStarr am I right in thinking you had one done before on the NHS? Was anything found and was it through your RM clinic?

big hugs to all! xxx

@VenusStarr Thanks so much for sharing your experience, so helpful. I was on the complex programme this time so hydroxy, pred 25mg, omeprazole and intralipids. My first fresh transfer last year also failed at the 7dp5dt point due to excessive bleeding as well, but I didn’t get a BFP at the time.

That’s interesting about the Emma and Alice test, I’ll see if Dr S will suggest the same. Have a feeling I might be ok there, but you just never know!

My FETs usually have a mix of Lubion and Cyclogest too. This time was a fresh transfer as it was a whole new IVF cycle, so I was only on Cyclogest 3 times a day. Seems to have done the trick in terms of keeping bleeding at bay, but I haven’t tested my levels this time.

I will try to opt for a natural modified FET in January (so basically following my natural cycle + trigger shot at ovulation) as medicated cycles never worked for me. Like you I also feel that medicated cycles mess up your hormones as there’s a lot going on.

I know right? Feels like so much work to achieve pregnancy!

I’m so sorry your FET loss was with a healthy baby. If anything hopefully it means you’re getting closer to achieving your goal, because getting healthy embryos can be a hurdle in itself. I’ll let you know what he says, I’ve booked a follow up with him via Zoom on the 6th.

If you’re doing your IVF in January then we could end up being transfer buddies. Big hugs back xxx

@clhiu I’m so sorry to hear about your BFN, although 8 or 9dpo feels early? Are you able to wait 2 more days so you’re 12dpo and can be sure? I think even with the HCG 10 tests I’d imagine the earliest is 10 or 11dpo?
Early spotting can be (amongst other things of course) due to implantation, but hormonal balances can also be a reason. Can the nurses at CRP advise?

Hopefully your next cycle will be fine and aligned with your plans.

It’s a lovely forum ❤️❤️ sending lots of love to you and to everyone who needs it xxx

Its another BFN for me this month 🙄. I tested today at what's either 8/9/10dpo, my cycle tracking is a bit off this month, maybe because of the chemical, but I know with the early detection at least a shadow would show by now and I got nothing.

I'm quite concerned as I started spotting at 6DPO, which is way too early from AF to arrive and I never spot in my luteal phase except for maybe literally 1-2 days before AF starting, never this early. Plus this month I was taking 2 x 400mg Cyclogests a day from 1DPO. This was my 7th time using that amount of cyclogest from around the same time of the month and I never had any spotting at all when using it, in fact I'm convinced it's what caused my 4th loss to be a MMC rather than spontaneous one as that was my first ever time using it.

So I'm not sure what's going on now! Two things I had on my side were very regular cycles and all fertility hormones levels in a good place as of any test I ever did (the last set was back in June) so I'm not sure why my cycle would suddenly go askew, but maybe it's to do with the chemical last month or the 3 months on CRP complex plan, I have no idea.
Hoping desperately for my cycle to be normal next month, although depending on when AF arrives now, we may miss the chance to try this month as I'll be away from DH for a week at the end of next week, so frustrating.

@Newbeginnings22023 I very much feel the same about this forum ❤

Sending hugs to anybody who needs them xxx

Thank you @VenusStarr ❤️ it really is so difficult. The nurses mentioned the same about a follow up with Dr S, I wonder what he’d do differently this time. Has he ever tweaked your protocol? Would be interesting to hear your experience with this if you’re happy to share.

My progesterone wasn’t tested although I was contemplating this at the start. I feel the fact that I haven’t bled yet may be a “good” sign that the progesterone was enough, just brown spotting here and there, but I’m no expert of course. My doctor said she’ll up my progesterone next time with the FET anyway but I’ll push for a blood test a day before the next transfer to be sure of it. Thanks for raising this, I hadn’t actually made a connection.

I don’t know what I’d do without this forum. Having a group that has been through very similar circumstances, and who are so lovely, really helps ❤️ hoping for good news for all in the coming months xxx

Hi @clhiu thanks so much for checking in. That’s exactly it. I had really high hopes only for that to be taken away 3 days later. I just did a 3rd blood test this morning actually, and as I suspected the number has dropped dramatically now, to 64. At least I now know it’s over. I spoke to my doctor and I’ve decided to take a 2-month break then pursue an FET around January - good to give my mind and body a break from it all. Fresh IVF cycles are intense! And yes this was my first time following the complex programme by Dr S so all of the above, and I feel my body has responded better than without his programme (I typically feel really poorly after a transfer, but not this time which is good news) so it was probably down to the embryo since I didn’t opt for testing. How are you doing? Hope you’re ok xx

Hi @VenusStarr thanks for checking in too ❤️ sadly it was bad news for me, but I can’t say I wasn’t expecting it. Numbers really should double at first, I learn something new each time! I thought a good starting level meant I’d be in the safe zone, but it’s clearly not as important as a healthy rise. Every stage is so difficult in this process. Thank you so much for your wishes. I hope you have lovely things planned between now and when you resume your process in January, the wait isn’t fun I agree. There’s lots to stay positive about though such as your recent positive results xx

Hope everything else is doing ok xx

Thank you @VenusStarr and @Newbeginnings22023.

@Newbeginnings22023 I am so sorry to hear of your news, it's so frustrating, especially when you're off to such a positive start and see a good HCG number and took you so long to get there through IVF. have you decided to take a 3rd blood test, just in case before deciding it's not worked for sure? It's always helpful to have next steps planned anyway. What are you thinking next? Are you currently on the complex protocol of Intralipids + Pred or also other immune treatment?

@VenusStarr I am so sorry, anniversaries are super tough, I hope having a plan in place can alleviate some of the pain from this ❤Very pleased about your AMH though, that's great! I get the impatience and wanting to start as soon as possible so this next month will feel like forever, but must feel good to have a date in place in the 'not too long' future - of course everything is too long in this world.

@HopefulH I'm really sorry to hear another cycle with the CRP protocol hasn't worked. 11 cycles wow! You cannot say you haven't tried, especially if the Pred makes you feel so awful. I couldn't take that and all the money thrown at it for more than 3 months, maybe I should have had more faith in the process or whatever or maybe if I had the money to keep going I'd have kept going so possibly that chose for me. Did you test again after CD9? You're absolutely right feeling shitty if this hasn't worked again, I just had to call it quits after just 3.

@Lily1990 sorry about another BFN :-(, what makes us keep going sometimes is quite something. I saw an NHS recurrent MC consultant over a year ago and he prescribed Pred (albeit only 10mg per day from a PPT rather than 25mg from OD like CRP) and he just told me at the time to call in when I was pregnant to get a prescript on, so yeah, if it's not been too long I should be able to get some that way at least.

Hi everyone, sorry I was quiet these past few weeks/months. Like many of you I took a little break, which I needed to prepare mentally for a new IVF cycle.

I had a fresh embryo transfer 3 weeks ago and got a positive, however my hcg levels far from doubled in 72 hours (350 vs 500) so it’s already not looking good. I was hopeful with the starting number but this went away quickly when I got the second hcg result. I’m already thinking about next steps but can’t say I’m not feeling deflated.

@VenusStarr thats really good news about your amh and your DH’s results, all looking good so keeping everything crossed for you.

@Privatemedical246 its lovely to hear positive stories, hope the rest of your pregnancy goes swimmingly.

Hope you’re ok @HopefulH and @clhiu and everyone else is as well as can be ❤️

xxx

Hello ladies

@HopefulH completely understand how you became so overwhelmed and low after everything and needed to take some time out. This is so hard and feels very tough how it works for some but many of us are still not having any luck despite trying so hard.

What microbiome test did you do, was that with CRP or somewhere else? That completely sucks you've not been sleeping thanks to the pred. I wonder if taking it very early in the morning would help so it's worn off more by the evening? Very strange you have been bleeding at 9DPO. I have had bleeding at 8DPO before, it started as spotting and then turned to red, then stopped after 3 days and I tested positive. (But then a week later negative). At the time I wasn't on cyclogest though and thought it might be a progesterone problem. Have you contacted CRP?

@Privatemedical246 wonderful you are approaching 12 weeks, when is your scan? Keeping everything crossed for you!

@clhiu I'm glad to hear you're doing ok despite the rough time you have had. Fingers crossed for your 2WW. Have you tried asking your GP to prescribe you pred and cyclogest? Mine was happy to - I think he felt a bit useless as the NHS hadn't helped me at all and the miscarriages are mounting up. That way you could stay on Dr S's plan (bar intralipids) for a much cheaper cost?

I actually never did SO at CRP (did letrozole at another clinic) so I'm "just" doing immunes at CRP. BFN this month🙄very annoying. And of course drove myself mad looking at indent lines on my test, such a waste of time. Just hope my period turns up ASAP so I can feel a glimmer of hope for a new cycle. xx

Hi everyone, sorry for my radio silence for so long. I became so overwhelmed and low by how shit everything was going that I just had to take some time out. This time of year is so hard as it's when all my losses have happened and this year I just can't get pregnant - which I'm really struggling with now.

How's everyone else doing?

There's too much to read back on but I hope things are progressing okay for you @VenusStarr re IVF treatment? I seem to remember you were due to start before Crimbo if poss?

I did a letrozole cycle this month, and after a microbiome test came back showing high inflammation markers, even though I have no bacterial infections etc., I went back on high dose pred post ovulation as advised... it's been horrible. I really feel awful on the stuff and have had three nights now of 4 hours sleep. I wouldn't mind the no sleep so much if my head didn't go to a really dark and grief ridden place full of fears and anxiety!

Anyway, I was just pondering on whether to start weaning off pred this morning (I'm 9dpo but not hopeful) and I've gone to the loo to find bright red bleeding. No idea what this could be. I've never had implantation bleeding ever, but I'm on 150mg aspirin at the moment so wondering if this could be a factor. Anyone else had random bleeding at 9dpo? It seems too early for my period when I'm still on high dose cyclogest. Really unsure what to do now. BFN on test this morning. Faint line yesterday which must still be trigger. Sigh. I really feel so done with this protocol now. This is my cycle 11 on all the meds and I'm just really feeling it!

@Lily1990 I’m ok all considered, thank you. I believe I ovulated yesterday and we managed a good amount of timed intercourse so technically in another 2ww. I can’t afford to see the clinic at all at the money so no intralipids for me and have to make do with the Pred I have left so my plan is from the day my app confirms ovulation has definitely occurred, I’m taking 10mg of Pred (much less than the prescribed 25) and the 2 daily cyclogests.
Are you still on the SO program or you ditched that and just going with immunes? Remind me please. I hope this worked for you, although I cannot advice on spots and facial skin in general as I get a few red spots before AF, but I also had them when I’ve been pregnant so not much of an indicator of anything for me. Every cycle is different as they say so I wouldn’t take that as a sign it didn’t work.

@fleur89 I really don’t like taking Pred. I was on a 25mg dosage for 3 months and it immediately gave me insomnia and palpitations, I really didn’t feel good on it. I also had a delayed period the 2 months I took it although impossible to know for sire if it was that or the cyclogest or the Letrozole either. I’ve had Cyclogest before without Pred and even Norethisterone and my periods were only drlayed by 3-4 days max then. If it’s making you feel unwell it cannot be very conducive in balance, surely. So hard to know what to do!

@Lily1990 I think pred is so strong. My mum is on pred for another condition (autoimmune!) And they want her to wean off 2.5mg every few weeks and she really noticed her symptoms vary so 5mg defo probably can affect you.

@VenusStarr that must be so frustrating about having to wait but great news about DH sperm count. Got to try and roll with the positives. Another month of supplements will help plus enjoy Xmas.

I'm okay. Incredibly anxious as approaching 12 weeks but so far baby has been okay. Just finding nausea and tiredness hard as I feel grateful to have got this far but urgh!

@KtAgs congratulations on your successful anomaly scan, that's wonderful!

@VenusStarr I understand your frustration about potentially missing a cycle in December, that is annoying! Do you think if you warned them in advance and asked to start like 1st/2nd they might make an exception? I guess it's good to have extra time on the supplements though and not have a mega intense December with all the Christmas stuff + IVF.

My protocol is Gonal-F controlled with Ganirelix, not sure what that is classed as in terms of mild etc? How does that compare to yours? I think we will do 2 rounds of egg collection and then a frozen transfer. Do you know if you can do a frozen transfer the cycle immediately following an egg collection? I am so clueless with this!

@fleur89 hope you are doing well. Really sorry if I missed this but did you have a loss on Dr S's plan? What dose of prednisolone are you on? I'm on 20mg and find I don't have many side effects but accidentally took 25mg the other day and had insomnia, so can see how hard it will be to take 25mg on a regular basis.

@clhiu how are you getting on?

@MediaMinion how did your scan go? Hope it went well!

I am 8DPO but pretty sure I'm out this month as I have some nasty spots. I have never had spots on the cycles I conceived, but the unsuccessful ones I break out in cysts around this time! Is anyone else the same? xx

@fleur89 that’s a very interesting article. I have a bit of a probably unpopular theory that sometimes, when things just work for someone it’s not necessarily down to a particular protocol or treatment, but just because the time of that cycle was the right time for everything to finally be into place and align as it should. This article seems to somewhat align with that.

I’m not fully clear though as to whether this implies that suppressing NKC activity could actually be a bad thing in that if you don’t have enough these cannot balance out the excess senesced stem cells? How’s everyone else interpreting this?
‘However, as natural killer cells rise in number over time, eventually a woman should have very low numbers of senescent cells, minimising the effects of having relatively fewer stem cells’
And how does all this align with the other theories around NKC according to which elevated numbers may attack a developing embryo? This seems to focus on the impact on the endometrium, but I’d love to know more about this theory if anyone’s come across it before and knows more

Really hope all goes okay for you tomorrow @MediaMinion , we will be thinking of you.

Came across this article on nk cells and found it interesting:

www.newscientist.com/article/2121182-timing-when-you-get-pregnant-could-prevent-a-miscarriage/