Immune/NK cells pred thread #31

@VenusStarr Oh right yes i've heard of that one that's just as good as the HSG. Will you get it done with CRP?

Still haven't had my peak but the lines getting darker this morning so I will probably get it this evening which is perfect as my trigger is at 9pm. In terms of when they've told us to have sex is different to what i was told last time as it was what you've said the three days from trigger for SO1 but this time - I was told to have sex on Thursday, Saturday, Monday and Tuesday. Maybe to cover the fact that I may have ovulated naturally yesterday 🤔 Not sure if we should have sex today in that case and do today, monday and tuesday to be on the safe side.

@VenusStarr Glad you feel ok about it. And oh yes, is that similar to HSG when they flush your tubes out to see if they're open? If so I had that too as part of my fertility investigations in 2020 and yes its supposed to help clean it all out, i've seen a lot of success stories after that being done so i really hope it helps you!

I'm okay thanks, I'm at peace with my trigger being tomorrow night now as i have been doing OPKs and I still haven't had a peak yet, so it sounds about right. I can feel my ovary though about to burst lol so I do think i'll be naturally ovulating very soon, just hope it doesn't happen today and would ideally want to trigger when they're naturally about to ovulate. Am i right in saying if I trigger tomorrow, I will ovulate on Tuesday? I've been told to start steroids on tuesday but just concerned they might stop/affect my ovulation, was thinking to wait a day before I take them.

So sorry to hear that @VenusStarr I can imagine how frustrating these delays can be for you. What does the hyfosy do? If its something you've been thinking of doing then it'll definitely be a good time to do that if next month is off anyway. I felt the same when I needed the polyp removing, just feels annoying having to let another cycle go but hopefully it will be better for you in the long run, having a break and maybe this hyfosy is what's needed while dh recovers too so might be a good situation for you xx

@VenusStarr oh no, so sorry to hear this. Hope all goes well with his surgery.

Does anyone know how long it takes for aspirin to leave your system and for your blood to go back to its 'normal state'?

@Ems123456789 this is my first time taking the intralipids on top of the IVF. The intralipids will be on day 12 and the FET on day 18. The clinic seem v flexible about fitting the intralipids in on the appropriate dates, saying that the FET is moveable because it's a medicated cycle.

Hi everyone thanks for the well wishes for the scan will update once i've replied to you all..

@HopefulH How are you feeling now are you still getting the palpitations? Sorry you haven't been feeling too great, where in your cycle are you now?

@comingsoon786110 they don't include the hydroxy on the tests because its doesn't surpress the immune system, its more of an immunomodulator. I think during covid times they found hydroxy worked just as well as the pred so they were offering that as an alternative and found people still had success from it from just regulating the immune system. I'm really really dreading the moon face - i did a healthy food shop today just to avoid any extra weight lol.

@Zest11 How are you? Have you had your transfer? If so wishing you all the best in your 2ww!! Got my fingers crossed for you x

@Ems123456789 when i had a medicated FET I was on the estrogen from day 2, had a scan around day 9 to check lining, started progesterone at day 12 while on estrogen, transfer was day 17 for me, hope that helps. I only had 1 scan as my lining was quite thick quickly.

@VenusStarr How are you feeling? are you glad you've had the break and are you still trying naturally? That's so sad about your friend, its all just so shit isnt it. I can't believe your nk reduces by 80% with the steroids and intralipids too. Have you ever asked dr s whether too much of a reduction can cause the opposite effect? It was just a theory as I'm sure I read we still need some sort of immune response to allow implantation to happen and if you are now struggling to get a positive, would that have anything to do with it? maybe you don't need intralipids as well as steroids. I'm no doc so please ignore me if it doesn't make sense, you may have already asked the question. Would it also be worth getting another nk cell test done to see if your numbers have reduced?

My scan went well thankfully! @VenusStarr i'm on 5mg letrozole. I had a small 5mm on the right ovary and i immediately panicked, but the left side had 2 dominant at around 16mm, lining was almost 7mm. I've been told to trigger on sunday which feels quite late for me, i'm wondering what happens if i ovulate naturally before that 🤔 dr edge also has stopped my hydroxy, and i'll be on the pred this month for the first time at 25mg. My polyp was nowhere to be seen after my hysteroscopy which was great news, and biopsy came back fine. She said it was quite a big collection of polyps/tissue approx 1.5cm x 1.5cm so i'm feeling hopeful this month with polyp gone and first month on the pred so trying to stay positive xx

For those who have had intralipids before an embryo transfer…. Can I ask how many days before the transfer the infusion was done?

@Danni8 yes he is so to be fair I cannot compare to others. Interesting you say that re the cykotines, I haven’t had either of these drugs mentioned to be by either doctor I have seen which makes me nervous as my cykotines levels are quite high.

@Ems123456789 I think I am leaning towards Dr Thum. But just conscious I feel like i have seen every immunologist. Is Dr thum the first RI you've seen? Also, I have high tnf-A and tried humira this time last year but it spiked my cytokines so switched to tacro which brought them down. I haven't tested them recently though.

@VenusStarr it's like we almost have to overanalyse everything to figure out what's been going so wrong. Re how I am. Not great, defo in survival mode. Hubby has planned a long weekend away as my bday is on Monday so hopefully we'll have a good time.

@star2022 I know, I can't believe we're in May already. Time passing has really been freaking me out since this all started tbh.

@HopefulH I stopped doing the bbt thing as it always freaked me out and I wondered if meds could affect the readings. I don't know if you do acupuncture. Sometimes they can look at your bbt and advise...

Hope everyone else is okay xx

@Ems123456789 sorry HCQ is hydroxychloroquine. I have stopped it for now though because I am in a strop a put off everything at the moment.

@VenusStarr I called St Mary's RMC yesterday and she said I will have to have another consultation with Dr Raj Rai and then he will decided. I disputed that and said how will his decision be different if I am in the same position if not worse than when Prof Lesley Regan advised me to do it. Anyway, waiting to hear back from them. Will follow up tomorrow.

@Ems123456789 I've had 3 x FET. Usually have a scan to check lining thickness around day 7-10, and then cleared for the transfer on day 17 (seems to be on same day as your usual ovulation). Then 10 day wait for pregnancy test.

@comingsoon786110 what is HCQ?

Your reduction in killing levels is very similar to mine.

two of my TNF alpha and IL gamma results are sky high. Well above the range. Neither doctor has said anything to me about Humira but I’ve read that this is often used for that. Not sure if anyone has any experience with that?

@HopefulH it’s interesting what you say re your left ovary. Mine has never responded until my third ivf attempt where I did Chinese medicine and took DHEA supplements beforehand and suddenly the left one came alive. I also got my best egg collection of that round. 6 compared to the 2 I’d had previously.

I wondered if someone could explain the medicated frozen embryo transfer timeline to me? It’s my first one as I’ve never been lucky enough to have anything to freeze. I should get the details next week but does the transfer happen around day 23 of the cycle? I’m assuming that if you aren’t doing stims and egg collection that you only have acouple of scans like the baseline one during your period and then again to check the lining?

hello all - i'm a lurker here, trying to understand it all before my first Dr S cycle (after 3 x FETs at Kings). I'm about to start the fragmin, intralips, omeprazole, pred + vits. ahead of a 4th FET.
Does anyone else find timing it all yourself, and matching up with Dr S protocol with the Kings one, tricky? For example I don't know to what extent getting the days wrong is significant (eg doing intralipids on day 11 v day 7). it's so much money and responsibility to get it all right. I carry my scruffy paperwork everywhere going over it all several times a day 👵

thank you @Ems123456789 and @star2022 that makes a lot of sense! When CRP explained it they whizzed through it and didn't even give me the chance to fully understand it all. The test was done when I wasn't pregnant. Does anyone know why they don't include HCQ in there on how it reduces the level of killing or is this just to suppress the immune system overall?

My reduction in killing levels don't seem that good to be honest and it scares me. I have read on these forums where other's percentages are far higher than mine which is why I probably continue to miscarry.

CRP emailed me back asking me to come in to see Dr S mid May but I am not going to arrange this appt until I have had my hysteroscopy. I just feel as though Dr S will keep adding medication probably some of it which I don't even need because the issue is something else. I feel in my heart that they will find something in my hysteroscopy and then I will try again with Dr S as obviously I do have NK cells issues too.

I have major moon face right now but glad to be off the pred so this can go down. It does take several weeks though if not months and then I will probably be back on it again.

Hope everyone else is well. 💚

Morning all,

I've had a bit of a crisis of confidence the last few days and have felt so crap on the pred and progesterone. Didn't sleep last night at all and felt like I was going to have an anxiety attack my heart was pounding so hard. Is it normal for the pred to make you feel so wired and anxious? This was my fourth month SO and looks like it's failed again as my bbt temp has dropped to baseline today and I'm only on cycle day 21. Wondering if my progesterone levels, even though I'm on the cyclogest, are not high enough. Either way sooooo bummed out.

@Ems123456789 I've also read that immune issues can cause low AMH/ovarian functure. It frustrates me that CRP are so reluctant to consider reasons for your infertility... my left ovary isn't doing anything at all on the high dose letrozole 10mg - and I'm now thinking about trying one cycle on a lower dose to see the difference. I'm concerned it's causing low quality egg. But I only ever manage two dominant follicles.

@star2022 I also can't believe it's May. I'm starting to really worry I won't be able to get pregnant again now as each month goes by! Hope your scan goes well today. Nice you've got Ms Edge. Looks like I'll have to have Dr Shehata next time and I'm dreading it!

@Ems123456789 yes, that is exactly it!! If I knew there was something genetically wrong then I'd be so much more like "ahh, well I can't do anything about that." Yes, same amount of prednisolone as you but for me, the insomnia isn't "mild." That's probably quite handy you can get everything done under one roof!

@star2022 yet again, you have explained the results so clearly! Next time, can you sit in on my appt with Dr s? 😂😃 Yes, following the plan and had the intralipids before EC. Hope the scan goes well for you tomorrow. Hopefully if your lining gets pretty thick in normal cycles, days 7-9 will actually be work quite well for you. Although it may be that the polyp contributed to a thicker lining. Let us know how tomorrow goes!

@VenusStarr yep it was my last day of letrozole yesterday thank god, I've got my follicle scan booked for tomorrow. Dr Edge says day 7-9 for me as i think my body responds fairly quickly to letrozole. Just hoping its enough time for my lining to thicken and i'm not sure how my lining will be after a hysteroscopy. How are you feeling?

How is everyone else? I can't believe its May already, I really didn't think i'd still be here on this journey! 🤦‍♀️

@Zest11 How are you getting on? Are you implementing dr s protocol alongside your ivf? Are you having intralipids and the steroids and will you be doing a fresh transfer?

@comingsoon786110 Like ems has said don't take this as gospel either but it's just how I have interpreted mine - so it looks like your total number of NK cells are high, but the activation of them are borderline so not normal nor high. However, when your nk cells are in a pregnancy state their cytotoxicity is higher than normal (22% should be below 20%) and for you apart from the IVG which reduces their toxicity the most, prednisolone and the higher strength of intralipids work best for you to lower their activity.

Its funny isn't it how we all are having to interpret our own results, you'd think after spending so much money they would at least explain it better lol