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!

Hi everyone,

@VenusStarr I've been following your progress from a distance and I've been rooting for you!. We're thinking we may look at IVF in the summer if we still have no luck falling pregnant naturally. I'm very sorry to hear you're not feeling optimistic about this first cycle. It's such a lot to go through. I have everything crossed for you that the other two make it to day 5. Are you taking all the ivf supplements recommended in it starts with the egg? I've just been re reading it as over time I've dropped things and forgotten things, so I'm just looking at what is recommended for me to take based on all the diagnoses I have now. Have you been on dhea and melatonin? There's a new membership site which has some great supplement overview downloads for different treatments.

@clhiu Hope you see a faint line today if you're still testing. I've given up on BBT now as found it stressed me out too much! But from my past experience I quite often have random dips on unsuccessful cycles. But the cycles I've got pregnant I haven't been tracking! So I haven't got that data to compare unfortunately.

@Newbeginnings22023 Hope your baseline scan goes well next week. Have you many embryos frozen?

@Welshlady89 A huge congratulations. It's always good to hear success stories. Can I ask how many miscarriages you had prior to your daughter? Were you on any blood thinners?

@Lily1990 Hope all is still going well and you're managing okay? Were you on the full protocol when you conceived this time? So Intralipids and Pred before a positive?

I'm on cycle number 15 now and loosing hope. This cycle I'm dropping the intralipids pre-ovulation and also the pred post ovulation, based on the fact that since going on this protocol I just can't seem to fall pregnant. I'll still be on the hydroxy. My acupuncturist asked around and apparently there are some ladies on Dr S's protocol that become infertile when on the protocol because some inflammation is required for implantation to occur and the high doses of pred can stop this happening. So - I'm at the point now where I think I've got nothing to loose and I'll drop the pred and see if we have better luck. I know my tubes are clear, I know my lining is clear from problems and I know my husband's sperm is okay. I've been ovulating every cycle on the low dose Letrozole and my lining has generally reached around 8mm - so putting all that info together, I feel like I'm one of those women that can't get pregnant on the protocol. Big sigh. Wish I knew. It's so hard having to guess all the time. I'd love to hear from anyone else that abandoned the protocol to get pregnant if there are any lurkers on this thread. I seem to remember there were some ladies that said they couldn't fall pregnant on the drugs and started them from a positive instead.

Hope everyone else is doing okay.

X

@VenusStarr so so sorry to hear the outlook from this cycle isn’t looking too positive. It’s such a bloody tough heart wrenching process to go through. I’m still routing for the other ones to make it to day 5. I know it’s not going to help in the middle of this, but it is indeed very positive that you get to have 2 more rounds and very importantly that your clinic can learn from this cycle and adjust your protocol accordingly for the next one. It’s almost certainly not over for you yet ❤️

Just another BFN for me this cycle it seems! I’ve stopped the Cyclogest and 10mg of Pred today and very tempted to go back full natural for the next cycle, no Pred or Cyclogest even unless I get a PPT.

@HopefulH I’m really sorry another round on the protocol didn’t work for you. You’d be absolutely forgiven for wanting to give it a try for a couple of months without the protocol.
I think those sources are absolutely right about how continuing to take steroids can have a negative impact on fertility and how they can actually stop some women getting pregnant. It’s very frustrating, but I see it happening to many of us even on this chat (getting pregnant easily without protocol and not at all with). I also heard the point about some inflammation being needed for it to happen and that’s why I decided to ditch the aspirin for example.
I only really had 3 cycles on the full CRP Complex protocol, but I think it’s very telling that as soon as I dropped that, I immediately fell pregnant again. Admittedly since then I had one cycle with Cyclogest, but without pred =
BFN and this last one with Cyclogest and Pred just 10mg however and nothing still. Impossible to really know where the problem really lies and whether any of this is helping or deterring pregnancy at all.
There’s also the way Pred makes me and many others feel, insomnia, digestive problems, palpitations, rised cortisol, cycle irregularities, surely none of those things are conducive to egg quality?
Of course in my case there remains my age, I only have one more ovulation before I turn 44 so immunes or not, the reality is that my egg quality must be really really poor. I also know my tubes are clear, my AMH I surprisingly decent, all fertility hormones tested last month and in check, regular cycles, plenty of fertile CM at the right time so age aside, my issues remain largely unexplained.
Even my NKC didn’t appear elevated when first tested by CRGH via the Chicago tests, but then somehow when CRP retested them locally just 4 months later they found the to be high - and yet I literally just had Covid so surely that was the reason then?

Hello all, thank you for checking in with me. Still plodding along, I have the scan with CRP on Tuesday which I’ve been trying not to think about. But now it’s getting closer I’m filled with dread. I’ve had barely any pregnancy symptoms, no sore boobs, no tiredness, only slight feeling of emptiness if I haven’t eaten for a while but it’s not actual nausea. So I wouldn’t be surprised if there was nothing developing and the Cyclogest was preventing bleeding from starting. My protocol is hydroxy 300mg, pred 20mg from ovulation, intralipids before ovulation and after bfp, plus metformin, vitamins etc.

@VenusStarr I’m really sorry to hear about your day 3 embryos. My understanding is that a grade 2 is pretty good? But I can imagine it’s excruciating waiting to hear the results at each point and really disappointing that they don’t have much hope for the second and third embryos. Like others have said, it’s great you’re doing a multi cycle package so they may adjust the protocol for the next cycle to maximise success. I hope you can take it easy and look after yourself over this stressful time. Hang in there ❤️

@Newbeginnings22023 great your baseline scan is next Friday and the next transfer should hopefully be in mid feb. Well done for making the decision about GCSF, it will feel good knowing you’re throwing everything at this one. Apologies if i missed this but were you able to test your last loss to gain any understanding about why it happened? Rooting for you for your next transfer.

@Welshlady89 congratulations on the birth of your daughter, that is so wonderful to hear and gives all of us some hope ❤️

@clhiu really sorry your test was negative this month, it’s so gutting and frustrating every time. Having regular cycles, great AMH levels, normal hormones, plenty of CM are all great signs though, I bet your egg quality is much better than you expect. That’s a really important point that if you did your NK cell test shortly after having Covid, you’d expect the levels to be raised so it’s harder to interpret. Did Dr S comment on that? Was the other NK cell test from the IVF clinic via blood or uterine cells? To answer your question, this was my fourth cycle on the protocol but the second cycle in August I had a chemical pregnancy (which was actually horribly drawn out and led to retained products) so Dr S added hydroxy and increased my pred to 20mg.

@HopefulH that’s very interesting (but very frustrating!) that some ladies don’t conceive on the protocol because some inflammation is needed for implantation to occur. I’ve also heard of cases where people have high blood NK cells but low uterine NK cells and so the steroids then make the uterine NK cells way too low for successful implantation / pregnancy. I think it’s a good idea to stay off the meds next cycle and see what happens - perhaps you could try taking the pred from a bfp if you get one? Have you thought of getting a second opinion - I saw Dr Gorgy’s clinic has a free open evening i think on 24th January. I know he offers more extensive tests than Dr S but frustratingly it’s very expensive and a bit of a minefield.

Sending love to all, hope you have happy and restful weekends xx

@Lily1990 I feel for you, the wait before each scan is a time of deep worry and anxiety at the best of times, but more so if you’ve experienced previous losses like we have, there’s no way around it. I wish I had some ideas to placate the worry, but the reality is that I’ve been exactly the same as you before any scan I’ve ever had and my head was never in a good place. The best advice I can offer is that of course the scan will come and and the anxiety will pass. I really really hope you get a positive outcome and the lack of symptoms is just down to the Pred as I know it can play that trick on you. I hope you have support and can distract yourself as best as possible between now and then. If you want to vent on here, feel free to post or even dm me in the meantime ❤️.
Thanks for reminding me about your journey, I didn’t even realise you could have retained products form a chemical! Did they pass naturally in the end?
I did tell Dr Edge at my first appointment that I’d literally just had Covid, but she had my bloods done there and then regardless, I also mentioned in one of my other appointments either to her or Dr Shehata (can’t fully remember now) and they both completely dismissed my concern 😒. My IVF clinic CRGH tested just over 3 months prior and I had both the endometrial biopsy and all the same
bloods as CRP. They found no elevated NKC count in blood or endo, just slightly elevated activity for which they prescribed just intralipids for my FET, but no steroids at all. So yeah, I am skeptical! And I also heard that too low NKC in endometrium can have a negative impact on implantation so a bit worried about that

Just popping on to say the other 2 didn't make it 😕 he wasn't entirely sure they hadn't arrested but they'll keep them to tomorrow. He said that my day 3 is good quality. I said I'd got the impression it was crap but he said grade 1 or 2 are good, so I feel marginally better but still very disappointed 😞
Got my consultant appointment on Tuesday.

Thanks for all your best wishes, sorry I'm not replying properly @HopefulH @clhiu @Newbeginnings22023 @Lily1990

I'm sorry about this cycle @clhiu ❤️

I'll be back to catch up, lots of love all xx

Thanks so much @clhiu for the lovely message, I really appreciated it! ❤ Completely agree that the wait before the scans is extremely worrying and there's nothing we can really do to reduce it. But I'm so happy to say I just had the scan and there was a baby and a heartbeat! Measuring at 7 weeks and 3 days which was a little ahead of what I'd thought too. Really can't believe it given my lack of symptoms. I know it's very early days but it's been 2 years since we last got to this point so for today I'm celebrating 😊

Really interesting your IVF clinic found your NK cells weren’t elevated via blood and endometrial tests, I can see why you’d be skeptical of your CRP results taken after covid. The problem is the test is so expensive so you wouldn’t want to repeat it in a hurry! I’ve heard doctors say that pred can be protective against miscarriages even if they don’t believe the science about NK cells, so think your plan to take 10mg of pred is a good one.

@VenusStarr really sorry your other 2 embryos didn’t make it ☹ that is really tough. I hope your consultant appointment is helpful today and gives you some hope. It’s a great sign the 3 day embryo is of good quality, it only takes one. xx

Hello, hope everyone’s ok.

@VenusStarr I'm sorry the other two didn’t make it but very good news that your frozen embryo is good quality. Hope your consultation went well yesterday xx

@Lily1990 I’m very pleased for you that things are looking good so far. Keeping everything crossed for you xx

I didn’t test the tissue with my last miscarriage because it was really early days.

@clhiu sorry it was a BFN for you this cycle xx

@HopefulH i know what you mean. I’m newish to the immune protocol so willing to give it a few tries before resorting to my older ways. It’s very expensive which is another significant factor. I have a few frozen embryos from several stimulation cycles over the years xx

Glad things are on track and going well @Lily1990 ❤️

Thanks for thinking of me @Newbeginnings22023 not good news at the consultation, he thinks my egg quality is bad, which was pretty hard to hear. Even though I think I already know its me. The frustrating part is that I'm the healthiest I've been in a long time, I cut alcohol out for 2.5 months before egg collection, am on High dose ubiquinol and NAC, etc.
I honestly just want to stop now. I'm going to give estrogen priming a go to try and get them growing at the same rate, although he wasn't sure it would make a difference and might slow everything down. So feeling pretty hopeless about our chances.

Does anyone use melatonin? Where do you get it from? It's the only thing from iswte I've not tried.

@clhiu how are you? Xx

Hi @VenusStarr I used melatonin in my second IVF cycle where we went from 5 eggs in the first cycle to 12 eggs in the second (melatonin) cycle. I got it from an online pharmacy, you have to say it's for jet lag and say you are going to a country with I think a 4+ hour time difference. I actually really liked taking it as it helped me sleep!

Good luck xxx

Thank you @Amy00 did you just take it during stims? I'm doing estrogen priming for a week before I start next time, so wasn't sure if to start then? I need to dig out iswte again.
Do you think it helped quality as well as quantity? Xx

@VenusStarr I'm really sorry to hear about your consultation, it's a terrible blow to be told your egg quality is not good enough, even when you suspect it it's a really difficult one to take because it's the one thing one can do very little about - if true. All these theories about supplements etc...none of it at this point in time seems to have enough scientific evidence to back it. It's even harder to accept when you're in excellent shape and overall health and your cycles are regular and seemingly everything is in great working order with the rest of your reproductive system. It's an especially cruel trick of nature I think, that your eggs shall age much faster than the rest of your reproductive system, which I think is been my issue all along, no problems ovulating, letting embryos implant and carrying a baby seemingly, but the embryos I've been creating have allegedly all been unfit for survival because of (assumed) poor egg quality.
I am so sorry, I really am, but I'm hoping your consultant is wrong there, different consultant will give you very different opinions sometimes and I really do believe there is still hope for you. For starter you have one frozen and you also have 2 more cycles to go in your package so I hope whatever adjustment you're able to do with the next 2 cycles, it will make enough of a difference to bring you success ❤

And thanks for mentioning the Melatonin thing, I never heard of that, but I did some googling after reading your message and it would appear it really can help with quality so I got myself onto an online pharmacy and as @Amy00 suggested I was able to order it in no time a with no bother for 'jetlag'. Since I'm also back focusing on egg quality and dropping the immune stuff, I will try taking that this cycle. @Amy00 can I also ask when did you start it in your cycle and how many days you took it for leading up to EC? I also have 8 x 500mcg Dextamethasone tablets left which my IVF consultant prescribed for egg collection as it can also improve egg quality during the same cycle if started at the beginning right up to ovulation. I don't have enough to take the same amount as I did then (1mg per day for 11 days), but I'm taking one a day of these 8 I have left in this cycle. It probably won't do anything, but worth a shot, plus it'll just go off if I don't use it. I won't be able to get hold of any more after this. @VenusStarr maybe worth mentioning it to your consultant for the next cycle?

Hi @VenusStarr and @clhiu - I'm so sorry I can't remember exactly the dose I took but I followed the exact instructions in the it starts with the egg book. I've lent the book to a friend so can't check! I think it was a few days before egg collection (and stop at egg collection. You shouldn't take it for too long as it will mess with your natural sleep cycle! Yes it is supposed to improve egg quality. In my first round we got 1/5 euploid so 20% then in the second round with melatonin we got 4/12 euploid so 33%. I hope it works for you!!

@VenusStarr I’m so sorry your consultation didn’t have a positive outlook. If egg quality is the issue then would you consider giving yourself 2-3 months to try supplements such as melatonin first before going for another cycle? I’ve read that it usually takes 3 months to see an improvement in egg quality. I’ve been on Impryl myself which is meant to improve egg quality as well. I know you shouldn’t have it with ubiquinol but I spaced them out (one in the morning and one in the evening). My point is that I think, in my humble opinion, that your strategy should be two-fold:

1. focus on supplements that can improve egg quality. I also took L- arginine before my fresh cycle. Then give them a chance (so a few months) to work

2. look at changes you can incorporate into the stims dosage/type/protocol and discuss with your doctor. I can see that he had some suggestions such as estrogen priming, but I’m not sure whether he discussed other protocol changes with you?

We’re here for you xxx

Sorry to hear about your appointment @VenusStarr did you have your fsh tested before the cycle?
I used melatonin before my last egg collection (and I use it occasionally if I’m struggling to sleep) and I did get a better yield of eggs but I think this is because I also took DHEA and Chinese herbs. Having said that I had 2 embryos from that round and neither worked out for me in the end so I can’t say melatonin was the answer if that makes sense.
what is your next step? Sending you positive thoughts.

Hi everyone I have been in and out this thread but needed a break I hope you are all well xx

Can't quite believe I'm still here on this journey but I noticed you were struggling @VenusStarr so I thought I'd hop on. I am so sorry to hear about your appointment, that must have been really tough to hear. Did you say you were with Create Bham? I had an estrogen priming protocol with them before and it was the only cycle that I had implantation although my egg quality that round was a lot worse (could have been because I'd had an all inclusive holiday with lots of alcohol the month before!) I also developed a polyp that round, which dr datta said could have been due to the estrogen (my lining at transfer was also 14mm!) and this ended up being a chemical for me - possibly because of the polyp but it was my only ever bfp (despite it being an ungraded blast) I've ever had in 4 years so maybe the estrogen helped in some way? Does your lining usually get thick or do you normally struggle? If you struggle, maybe estrogen priming is what you need to try like the others have said. For me, my lining gets thick on its own so I think I need to steer away from estrogen. Have you had your FSH checked?

Just an update from me:

After trying 6 months of superovulation with CRP, I stopped in Sept as all 6 failed. We then had a few stressful months so took time out from ttc and this month I decided to get some checks done to see where I stand with amh, AFC so we could try naturally. My scan showed up another 2 polyps in my uterus (after having a hysteroscopy just last year with mr jan 🤦‍♀️ ) so I'm now having to fork out a few grand again to get them removed next week. Just my luck. So, now I'm too scared to try naturally for a bit in case polyps just keep re-occuring after surgery, so I have made the decision to go back to ivf next month to bank some embryos. My AFC has also dropped so much so I think we need to embark on IVF asap.

So I had a consultation today with Care - which was actually the best consultation i've ever had (and i've had a few in my time!) I am a poor responder based on previous ivfs, so she wants to try a cycle where I have testosterone gel from day 6, and wants to incorporate melatonin too along with all the rest clexane, steroids, intralipids basically chucking everything at it. Has anyone heard of success with testosterone gel? She said it can help create better embryos but its different to dhea apparently and the melatonin can increase number? I'm just so scared of going back to ivf again and putting my body through all this, but dh and I have decided this is the last time we try. And it sounds like she is doing an individualised approach which I like so fingers crossed.

Forgot to add @VenusStarr is testosterone gel something to look into potentially to help embryo quality? I've been reading success stories on it and they seem quite good. Apparently it is different to dhea as that takes 3 months to work but this only needs to be used 2/3 weeks before egg collection, the consultant also said they have a lot of success with it xx

Hi everyone, you seem really knowledgeable on this topic and I’m only just learning about it- can anyone help me understand how immune treatment works?

does it have to be done along with IVF, or can you do it and continue to try naturally?

how long do drs usually say the immune
protocol takes to have an impact on fertility?

thanks so much! I’m looking into this route due to recurrent early losses and Hashimoto’s.

Hi everyone,

I was previously on one of the older threads. Hope everyone is doing well.

Were thinking about a frozen transfer at our clinic but also using the help of Dr S aswell. Would anyone mind sharing their frozen transfer protocol? We’re just so unsure if we can afford it. I have emailed CRP to ask roughly what medications I would need and when they advise intralipids but they’ve said I need to book and pay for a consultation first.

we’re absolutely not doing anything this side of the year as we will need to save up but I’m literally just looking for a rough idea so we can work out how much we need to save.

Thank you so much in advance ❤️

Hi @LuckyNo14 - here's my recent FET protocol with Shehata; hope it helps!

Last page;

@MotherOfShihTzus thank you so much ❤️❤️

Anyone ttc with an immune protocol?

I'm with Dr Thum and will start 25mg pred on a bfp.. my results suggest pred or intralipids would work equally well for me but as this will be attempt #5 I think I will do two infusions of intralipids at Cherish to be sure. I don't think I have it in me to try again after this.

I've been patiently waiting for a BFP since November.. I think my uterus is a watched pot now

MENTS Pregnancy, Live Birth

Hi @RumandSpinach I am currently >10 weeks along under Dr Shehata. My protocol is intralipids pre-ovulation, upon BFP and then monthly through to 20 weeks, plus 20mg prednisone and 2 x progesterone pessaries daily from confirmed ovulation (bbt spike). Still early days but have had 3 good scans so far. Waiting on NIPT results and the 12 week NT scan next. Fingers crossed. Trying not to think about it too much due to previous heartbreak but this is the furthest I've gotten since I had my daughter back in March 2022 (healthy, uncomplicated pregnancy). Dr S thinks my nk cells issue was either triggered by my previous live birth or as a reaction to covid (I didn't catch covid for the first time until after my daughter was born and then had an awful run of it several times in winter 2022/23).

Good luck ttc 🙏 So far treatment is working for me and I hope it works for you too xxx

@fleur89 congratulations- fingers crossed you are out of the woods and stay there for 30 weeks!

How have you found the pred? The side effects list is pretty scary, psychotic symptoms are listed under common!