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!

@VenusStarr that’s brilliant news 😊 so pleased for you both! Hope your protocol review goes well, are you planning on doing a fresh transfer? We are still planning on doing IVF in the new year if haven’t had any luck before then, and have our nurse appointment next week to review the protocol.

I’m only 2DPO due to my late ovulation on CD25, long cycles are so annoying! But I’ve been doing acupuncture and finding it very relaxing so hopefully that will help me to be more chilled and accepting if it’s a BFN this month.

@Ems123456789 that’s fantastic ARGC are doing monitoring of your natural cycle, I wish I could have that done! What immune tests are they doing? Great they are karyotyping too, even if it’s fine it’s something you can then rule out to have a clearer picture. Interesting you have a call back from your RM appointment, will you ask in advance if you can have the results before going?

I FINALLY have my first NHS RM appointment (which is a joke in itself as asked to be referred a year ago after my 3rd loss) at St Mary’s in December. Does anyone have experience of St Mary’s? I don’t have my hopes up but hoping hearing another doctor’s opinion may be helpful.

hope everyone else is doing well xx

That's great news about your OH @VenusStarr. I hope everyone's cycles/testing goes well and people get helpful results if they are being investigated. To answer your earlier question @VenusStarr , I think the hydroxy does make you more susceptible to illness. All the lurgies just linger more than I think they should.

Had my anomaly scan on Monday and everything is progressing well with our little girl. So that's good. Had a bit of a sobbing breakdown before I went in though - I hate that scan. Too many bad memories. Xx

So pleased you're little girl is growing well @KtAgs 🩷 your emotions must be all over the place, I hope things continue to be well.
Thank you about the hydroxy - it must be that. I forgot when I came off it last year, I got an awful rash on my hand. I kind of forget that they are powerful drugs. Have you weaned off everything now?

@Lily1990🙏 for your tww, you've done everything can so will keep my fingers crossed for you.

I found out last night on Facebook that my clinic won't start cycles in December 😭 I'm ok really. But we literally might end up missing it by a day. It makes sense and actually it's probably better for us to give us both 3 months on our supplements. I get to carry on zumba for a bit longer too 😅 (sounds weird but I'll be sad to not be able to go).
We're doing 3 cycles @Lily1990 so freeze all (if I get anything!) My clinic do freeze a day 3 embryo. Can't remember if I said before, but we're not pgta testing si there us a chance of a fresh transfer on the last cycle but I'll only do it if my lining and progesterone levels are optimum.
What's your protocol? Mine will depend on my amh, but its either mild or natural modified. Will let you know!

@Ems123456789 that's great to hear your clinic are being so thorough and getting to know your cycle and hormones. Would you try naturally?
I'm sorry you've got a wait for the rmc appointment. I hope that appointment gives you more useful information going into your ivf cycle.
So we might end up cycling at similar times @Ems123456789 @Lily1990 xx

Hi ladies

Sorry for the slow reply, I went offline for a while to process recent test results and distract myself.

I spoke to Dr S and he recommends I stick to the RI protocol. I am awaiting a second opinion from my private doctor at The Portland Hospital who treated my previous MMC / RPOC.

I have been researching like mad how to reduce side effects and came across this lady. I really recommend watching her videos, there are lots of tips on how to manage / reduce / avoid side effects of prednisone. She's also on YouTube.

www.facebook.com/prednisonepharmacist

Just had my first real period in 2.5 years (birth of DD1, then breastfeeding, then back to back recurrent miscarriages with RPOC). Feels good to have my body back in a proper cycle again after so long. We are going to wait one more cycle to try to ensure my hormones have fully stabilised.

To prepare I've been taking high dose coQ10 (600mg), baby aspirin, plus all my other standard multivitamin prenatals / supplements such as vitamin D and omegas. My husband is also taking coQ10 at 200mg. We have both cut out refined sugar entirely. By the time we try again this will have been our regime for more than 3 months, which I understand is optimal for egg / sperm quality.

Really hope 2024 brings good news and the RI protocol works.

Hope everyone is doing okay xxx

Hi everyone,

I'm taking 20mg of pred per day and I'm 6+6 weeks pregnant after 5 miscarriages between weeks 5 and 7.

The pred is worrying as my symptoms aren't obvious at all.

But also my blood pressure is sky high.

I've got a 7+1 week scan on Friday but are either of the above issues familiar to those on this thread? And what happened next for you?

TIA

Hi @MediaMinion, I'm prescribed the same as you but haven't started taking it yet as we'll try in December. I was pre-warned by Dr Shehata that prednisone masks the symptoms of early pregnancy and not to worry about it. Gentle congratulations by the way, have you noticed any side effects from taking prednisone so far?

We've got a scan tomorrow and I'm not feeling very positive, hopefully the pred is masking everything but I think that's unlikely. I think others have said they still have some symptoms.

@MediaMinion I’m really sorry to hear about your worries, it’s such a hard time before any scan, but especially if you have no symptoms. I wish I could advise, but I’ve never been pregnant on the Pred. I hope your scan goes well tomorrow and it’s just the Pred masking the symptoms as Dr Shehata says ❤️

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/

@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

@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

@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!

@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!

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!

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

I'm sorry you're struggling @HopefulH ❤️ this time of year is difficult for me too, it's the anniversary of my surgery next week, 2 years since I was last pregnant. It's hard 💔 I'm sorry you're feeling overwhelmed.
I'm not on pred at the moment but myslewp is awful. I tried one a night nytol but it makes me feel so rough the next day.

I'm sorry you're bleeding, it does sound too early for your period though, especially on progesterone. I'd stay on pred for a day or 2 longer, just to be sure.

We've missed Christmas cut off 😭 so it'll be the end of December before I can start. I'm flitting between it's OK and feeling totally left behind.

Can't remember if I said but my amh is 9.8! So pleased. It was 5 when we did our first cycle, so I'm hoping that is a good sign for us 🙏

I'm sorry about your bfn @Lily1990 ❤️ did you say you're considering ivf in the new year? I hope ut doesn't come to that for you.

Fingers crossed for you @clhiu I hope you're doing ok.

Great news about reaching 12 weeks @Privatemedical246 💕

Hope everyone is doing well xx

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

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.

Good to hear from you @Newbeginnings22023 ❤️ I'm sorry you're in limbo. It's really hard not to be deflated, I hope it's not an indication of things going wrong. Are you testing again, or waiting for a scan? Those early days are so, so difficult. I'm thinking of you and keeping everything crossed that you have positive news in the coming days 🙏

@clhiu thank you. Feeling very up and down at the moment, it was all go with tests and results and now it's all stopped, it's hard to stay motivated. I had a bit of hope creep in with our results but it's gone now. Seeing my consultant in Thursday morning, so hopefully things will get moving with signing consents, nursing appointment and getting meds.
I am really scared though 😰
How are things with you? Are you due to test soon?

Hope everyone is feeling OK xx

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

@Newbeginnings22023 💔❤️ I am so sorry to hear this, even if you expect the worst, its really difficult to hear. Sending you lots of love. I think taking some time out sounds good. Dr S may want to see you and might tweak your protocol before your FET. Did you have your progesterone tested before transfer?
I hope you can have a restful break xx

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

@Newbeginnings22023 ❤️ Dr S has reviewed my meds a couple of times and I'm on extra immune meds - what's your protocol?
My fresh ivf loss was different - I think that was a low progesterone issue as I bled heavily at 7dp5dt then tested positive but very low hcg and low progesterone. I did some tests after to look at inflammation and infection with crp (Emma and Alice). Funnily enough all was OK but earlier this year when dh did his sperm dna frag, he did a urine infection test and it showed ureaplasma and I had it too, so it was strange it didn't show previously.

My ivf protocol now includes lubion and cyclogest and my progesterone levels were much better in my FET. Was your FET medicated? I was thinking this morning that I think my hormone levels are off and wonder if this is a contributory factor in our losses. I'm tracking my temps still even though we're not ttc and I have ovulated but my temps are low. It amazes me that anyone gets pregnant when everything has to be perfect!

My immune protocol now is hydroxychloroquine, prednisolone, intralipids and gcsf. He added the gcsf because I lost my FET pregnancy but the baby was tested as healthy. He said he feels I'm losing healthy pregnancies and my nk cells are very aggressive.

Sending a big hug xx

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

@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