Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

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Remember that AF won’t start if you continue to take the progesterone

@Hopeandfaith1990 that's a very good point. I hadnt even thought of that x

I’m 10DPO today and done a FRER and it’s stark negative so I guess I’ll just have to follow the advice and stop all meds until next cycle. I don’t want to prolong anything starting like mentioned above.

So sorry to hear about your negative. It's all very stressful, I know! X

Hi all, so sadly I am now starting cycle 7 in this part of my journey. This will be my fourth cycle on pred from ovulation and I am still a bit worried about seemingly being on a cycle of two weeks on pred and two weeks off (roughly).
I know 7 cycles isnt many in the grand scheme of things but it is taking me somewhat longer to fall pregnant than it has previously. My tracking is pretty good I think. I am always able to find my LH surge and confirm ovulation with a long term temp rise. I cant really do more than I'm doing.
Just wondering if anyone on here us in the same situation. Worried the lda and pred is actually slowing things down even though I need them.

Everything I’ve read today says 10dpo is too early to test. I’m confused

i didn’t take pred or progesterone today. AF due in two days. Not sure whether to take pred until it comes or hold off 😭

I know, its so hard! In reality it is too early to test but I get why the doctors tell us to stop. It only delays the cycle if its negative.

Once or twice I've been REALLY convinced I've been pregnant (lol hasn't happened) so I've continued the Pred alone for an extra 1-2 days because that won't delay your period if you're not pregnant if that makes sense? But I do usually stop the progesterone because that hasn't been an issue for me historically. So if I then test positive its more about the steroids / anti NK cell treatment rather than the progesterone. x

Hi, I am in the same position. I tested negative after my last miscarriage on Oct 13th and have had 7 cycles since, all negative. Been on the Pred & Prog for all, and added the Hydroxy in Jan. Also feeling pretty down about it and actually think we're about to move to starting IVF at the end of the month if this cycle is negative..! Feels like a pretty big decision but I don't know how much longer I can take of feeling like I'm not making any progress towards our goal of bringing home a baby. I've been pregnant 5 times and have been on this journey for 2.5 years now and it gets harder every month. x

Goodness, we are pretty similar then really. My journey only started 18 months ago and three losses in that time, one MMC and two chemical. I can’t help worrying that the Pred is causing an issue but then people do appear to fall while taking it, so probably just bad luck. There is the getting pregnant in the first place and then the question of whether the treatment will work that is so hard I think.
With the IVF, I don’t think I could afford to do it privately so I will probs have to wait for my NHS referal ((over a year so far). I went orivate for the immune sad I suspected an issue there, long story!
My fear, to be honest, with the IVF is that the medications won’t work and then I will have wasted a rare NHS opportunity or money I can’t afford if I did go private.
I would really prefer not to have it for a first pregnancy and then, if the meds did their job, maybe try for a second with IVF and the meds (mind you, I’d have less money still then.
it is bloody difficult isn’t it. I still question whether we are just very unlucky with the conception thing and the 7 months though, especially as others seem to achieve it. X

I don't think the Pred is an issue to be honest. I don't think it has any impact on hormones and lots of people take it and fall pregnant, even for unrelated things I think.

I am SO conflicted about doing IVF. I feel so resistant to it as I know we can fall naturally (or at least we could in the past), and like you I worry about wasting the cycle if I am just to have another loss. However, I'm not sure how many more negative natural cycles I am prepared to go through, and with an IVF cycle we will do PGT-A testing to hopefully support pregnancy if we are lucky enough to get to that stage.

I have had one MMC on the meds so I guess that does propel me a little more towards IVF, although I've not had a pregnancy on the Hydroxy, but I would continue to take it through an IVF cycle anyway.

I think I am conscious of time passing and how much each negative cycle is affecting my mental health (e.g. pretty badly!). My husband is 42 so I am aware of that too, although I am 34. I also think for the future - if we are lucky enough to 'bank' embryos and then trying for a second or even a third might be slightly easier. Obviously I'm aware that is best case scenario and IVF is no guarantee !

No, I do think you are right about the pred not being an issue. I do get what you are saying about the IVF but I must admit the hoped for banking of embryos does make the idea appealing. I think it is difficult to know whether to just bite the bullet and go for it. If I were you I would probably set a time limit, say another four cycles and then go for it x

Did anyone find the hydroxy or pred pushed their cycle back? I’ve got negative tests but 2 days ‘late’. We had booked to go away for my next ovulation but now the dates will be off 😆

Hi everyone, I’m new to this group, I hope you don’t mind me joining. I’ve followed these threads for a little while and it’s been incredibly supportive in a way, not feeling so alone on this awful journey. I feel like I’ve got a very similar story to some of you :(

2 MMCs at 9 weeks and 7 weeks, then 2 Chemicals
Had a daughter with a previous partner in 2017
Desperately trying for baby #2 with my husband (his first child) since 2022. I’m 43 and my husband is 40 so we really don’t have much time left. Egg quality is against us.

We’ve been seeing Dr Shehata since June 2024, I was diagnosed with high NK cells and put on complex plan since Aug 2024. I’m taking 20mg Pred/Prog/Intralipids from ovulation. Started Super ovulation from January and added Hydroxy after a chemical on the plan on cycle 1.

We’re now at the end of cycle 5, 11DPO and another BFN so onto the last cycle before another review 😢
I don’t know how much longer I can keep doing this. The meds are really taking their toll on me and I’m so tempted to stop as it feels like it’s stopping me from getting pregnant at all whereas before it happened quickly. We are now considering IVF again which i also feel strongly against but I don't know where else to turn.

@Hopeandfaith1990@Objectiontime@Gizmo1983
I really feel your pain and am feeling in a very similar position. Not sure why it’s taking so much longer to get pregnant.

@SWMum9I made the mistake of taking Pred for a few days longer and it messed up my cycles and had to take a break to get them back on track. Dr S strongly advised me to only take them for 10 days and no more. But I totally get what you feel as I was in the exact same position. I felt so much fear and doubt about doing the wrong thing and messing up my chances.

I feel for all of you in this sucky group and am grateful for the supportive little bubble you have created.

@Objectiontime I am slightly worried we've been too hasty but we're booked in for our first pre-stims appointment and have paid for a whole cycle - in for a penny hey! 😜

@SWMum9 It could just been as its your first cycle with the protocol, it'll adjust hopefully. I've not found that with the Pred but definitely with the Progesterone.

@ALittleLight Sorry to see you here but glad you feel its a safe space and it is really comforting (despite being bittersweet) to 'meet' people who have been through similar. So sorry for all of your losses. I have felt the same about the medication, its really hard to trust the process isn't it.

Some comfort comes from knowing lots of people have conceived on the same protocol. As above, we're going full steam ahead with IVF despite me having reservations. Like you, I just don't know what else to do and every month gets harder and harder to face BFNs. I'm terrified though.

@ALittleLight Welcome to the thread, although you will understand when I say I'm sorry you have had to join us. The waits each month are awful, we would all agree with you there. The pred gives me a new symptim each cycle. It doesnt accumulate, thankfully, just different each time.
Interesting you mentioning testing at 10 doo and then stopping the pred. Makes sense about just taking it for 10 days but if worries me because with my three past pregnancies I have only got a very, very faint positive at 12 dpo so I think I might try testing at 10 doo and stopping if negative and then testing at 12 dpo, etc. Hopefully missing a couple of days if it changes might not have too much effect.

@Hopeandfaith1990 I want to wish you the very best of luck with the IVF. It's really hard to know when it's the right time to move to trying something else but you deserve a break and I so hope that this is your answer x

Hi all. Dipping back in here after a little while to ask if anyone else has had the saline uterus scan?

Have had weird post-ovulation spotting for the last few cycles and CRP have suggested this to check nothing physical is causing it. The more I think about it the more I don’t really understand how it works or whether it might be quite uncomfortable.

I mean will still do it regardless because in for a penny and all at this point, but wondered if anyone had any experience of this they could share? Thank you!

@ALittleLight @Hopeandfaith1990 @Objectiontime hi ladies sounds like we are all very similar( my back story quick as I can), been trying 3 years in October 4 losses, a blighted ovum, a chemical and then a 15 weeks loss no cause found after this I just couldn’t get pregnant again tried for a year ( did find a blocked left tube ) but should have still managed in a year as from my scans I always ovulate from my right. After a year of trying we started ivf got a perfect 5aa embryo pgta tested.it worked got to 10 weeks using mr shehatas plan as I have high NK cells then at 10 weeks exactly no heart beat they said it must have stopped within 24 hours. I had an mva that was totally negligent and it took 5 months to get rid of the retained tissue. I’ve had hysteroscopy and luckily no damage. Genetic testing for the embryo totally clear also me and hubby just got our own genetic testing results and all fine.
I’ll be 42 in July. Although I may be on the younger side my clinic do own eggs till 45 pretty certain I’m going the donor route, reasons being more than anything I worry with every miscarriage I may get scar tissue then things become even more complicated, I just want my next time to be my absolute best shot as I just can’t take this shit anymore. Hubby is ok with donor he would rather try more own egg ivf but for to the complications my 1st cycle started in September and I couldn’t even try again till March. We did a 2nd cycle but I didn’t respond my amh is about 5 I think it was 10 when I started IVF last year.
@Hopeandfaith1990 we did the same just paid for the lot upfront and went in whole hog. I honestly didn’t find all the drugs and retrieval bad at all. When do you start?
love to all xxx

@Gizmo1983 you have really had the most hellish time hun, there's no doubt about it. This is all more than anyone should have to deal with isnt it. Good to have the clear genetic testing results all round but it doesnt give you any reasons, I know.
I might see if i can get an online appointment with Shehata at some point. I have all my results from elsewhere but I do really want to get his view on my situation regarding my allergy to peanuts and not being able to have the intralipids. I am not sure the pred and aspirin alone will work but I will just have to wait and see.

@Gizmo1983I am so sorry for your losses and all that you’ve been through. I’ve followed your journey for a little bit when I found the old threads and my heart goes out to you. Life is so unfair but you have been incredibly strong and have kept going. Good luck with the donor egg route, hope it all goes as smoothly as possible! I do hope you get your beautiful rainbow soon and all the pain will have melted away!

@Objectiontimethank you for welcoming me into this group. I’m sorry you are not able to have the lipids. Have you been prescribed Hydroxy yet? From what I’ve read, it seems to have been the missing piece for quite a few women in Dr S’s plan. I was given it after my chemical in January. I have had a lot of hair loss from the steroids and Hydroxy which I hate, but I don’t see many comments about it so it must just be me, sigh! Also I do stop Pred at 10dpo but keep testing until AF and I would restart if I get a positive at any point. Dr S advised to do it this way so I don’t risk taking too much unnecessarily and he said it wouldn’t make a difference if a day or two was missed.

@Hopeandfaith1990good luck with the IVF, wishing you all the best. If you get the natural low stim method, it isn’t too bad at all. We have actually been through 5 rounds of IVF with PGT-A testing in 2023. Long story but my husband was working in Manila, Philippines and I was in London at the time. Because we were long-distance and I was 41/42 at the time, egg quality was an issue so we thought we’d give it a go as it was the only way to try. Sadly it didn’t work out for us as we managed to get 3 great blasts in 3 of the 5 rounds but they all failed the PGT-A. We are now living together in the Philippines but Sod’s Law is that we can’t seem to get pregnant. So we might give IVF another go as I don’t know what else to do. If you have any questions at all, I’m happy to answer them!

sending everyone love and the best for the next steps, whatever you decide <3

Hydroxy hasnt been suggested to me, just the pred. That said, I'm not with Dr Shahata so this may make a difference. My total NK cell count is around 250 so I'm not sure whether hydroxy would be for if your count was higher, you are right, it is annoying re the infusions although I am thinking that if I had been able to take them I wiped have had to have one after ovulation every month for the last seven months so I could have spent around stg2100 that I havent has to spend, unless if course I had fallen pregnant sooner on the infusions, x

@Objectiontime its just rubbish for us all isn’t it. I’m not convinced the infusions make much difference. They aren’t used in shehatas nhs clinic. If I could have opted out of them I would have x

It is. I am not too disappointed about not being able to have them it's just that my treatment indication was that I would get the best results from IVIG but that pred plus the infusions would do tge same thing. No way can I afford IVIG, particularly as the first injection has to be given before a positive test. At stg2000 a time I think not !

Hey! Is this the same as HyCosy? If yes then yes I've had one and I fell pregnant the same cycle xx

@Hopeandfaith1990 i’m not sure. They said next step to investigate would be the saline scan or hycosy so think they might be different things, but not entirely sure which one I’m booked in for! I have heard other people having a similar experience though so fingers crossed!

That's good to hear that you didn't find it so bad! Tbh I (as I suspect most of this group have) have been through SO many procedures now I am quite resilient but I am worried about the frequency of injecting myself!! We've a meeting next week with the Nurse and then hopefully get the meds etc delivered to start next cycle..! Scary! But in a way it is nice to have something different to look forward too. TTC is the definition of insanity in some ways!!

Hope you're okay - how is the donor eggs journey going?xx