Immune/NK cells pred thread #34

[Hopeandfaith1990]

Hi all, started a new thread as the old one was full. Not sure if this is the way to do it but I've c&p'd the list of people on the previous one as much as poss:

Old thread here: https://www.mumsnet.com/talk/conception/5228367-immunenk-cells-pred-thread-33?page=40

@Jecca88
@Gizmo1983
@Deerdancer34
@Objectiontime
@SWMum9
@TammyinCork
@Newbeginnings22023
@Fletchasketch
@Morgan236
@CarpeDiem75
@ALittleLight
@MC8
@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

@Morgan236just out of curiosity why is he telling you that you are out this month if you have a follicle? Which dosage are you on? I have been on letrozole for years so I am just wondering why you can’t try this cycle. Is that because of the lining? I am just off to do my scan to start my cycle! I feel like my period are all over the place because of the progesterone I hope it won’t impact my lining for this cycle I am a bit worried now!!

@CarpeDiem75Yes it’s because of the lining! My follicle was 22mm so although there was only one, he was happy with the size of it. My lining was just no way near where it should have been. He is upping my dose of letrozole next cycle to 7.5mg and also putting me on oestrogen to support my lining.

Does being on letrozole tend to regulate your cycles at all? I actually induced my last period with progesterone after my chemical so I don’t know if that’s done something! Dr S said it wouldn’t have been that but you can’t help but think! Maybe ask for oestrogen as well to support your lining xxx

10 DPO - I have come off the prednisolone, progesterone etc.

Yes, just prednisolone, omeprazole and progesterone, aspirin plus prenatal vitamins / supplements - I am not on intralipids. Husband is also on Impryl and has been following urologist recommendations for his sperm DNA fragmentation (18% when tested in July, after our sixth loss).

@Morgan236unfortunately no it doesn’t regulate my periods but because I trigger ovulation most of the time it kind of does because I always have a 14/15 days luteal phase.
I didn’t know you could get oestrogen to support the lining. I will ask at my next scan. It seems that despite my periods are quite light apparently I am still shedding well! So off I go onto a new cycle… I am on 7.5mg too! I could be on 5mg but I have asked to up the dosage so I get more eggs released per month to give me more chances! Don’t seem to work well though lol

@CarpeDiem75Fingers crossed for you 🤞. Deffo ask for oestrogen and with your upped Letrozole you are giving yourself a fighting chance!
Have you also ever tried clomid? Unsure if Dr S offers this but it might be worth giving it a go in the future xxx

@CarpeDiem75 Thank you, and I really hope you find answers soon. Maybe superovulation would be an option? I am 42 now so I know my time is limited.

@Hopeandfaith1990 Thanks. I know others, like Dr Thum and Dr Gorgy, will not start prednisolone and progesterone until positive test. It's so hard to know what to do!

@Deerdancer34 Sorry to hear this - I can't imagine how it must feel after 3 cycles of no result. I know some people have gone "rogue" and started the prednisolone and progesterone at 3 or 7 DPO? I am thinking of getting advice from Dr Thum soon, for a second opinion.

@Morgan236 I am so sorry to hear this, and wishing you lots of luck for future cycles... The intralipid treatment sounds like a pain - I cannot have it anyway, as it would involve a lot of travelling, and I am based in Cork - but I have heard it has worked for so many!

@Morgan236thanks! Clomid was the first thing I tried a long time ago but didn’t do anything at all because I have PCO morphology (another thing lol!) so letrozole is the only thing that could work on me. I had my first after 3 months on it but it was a long time ago , we have been ttc for 6yrs for another one and Dr S plan is my last hope! So fingers crossed!

@TammyinCorkthanks! Yes superovulation has been the way forward for me so far so let’s see! I am the same I am 42 so that’s pretty much my last months I am going to have to stop at some point… tough decision!

Thank you @Taurus26 it’s so frustrating isn’t it.

After two trips to the hospital pharmacy yesterday during and after my work day I managed to get it just in time! And my private prescription arrives on Monday 😅

how is everyone? Hope you’re having a good trip @Jecca88

Had a bit of a wobble yesterday - my ‘inner circle’ is 9 girls including me and abother of them announced to me yesterday - it’s now 6 out of the 9 of them that are either pregnant or have had a baby - and the thing is that aside from 1 of them I started trying literally years before all of them. You know when you just have a realisation of the whole situation and it just feels bleak. I was standing in this queue to get my medication for recurrent miscarriage whilst reading a notification from friend about her new pregnancy. Just really hit me! I’m sure I’ll be fine soon and we’ve a meeting with our consultant on Monday to talk about the next FET so it’ll be good to get things moving on that front again.

sending love to all xxxxxx

@Hopeandfaith1990 I'm glad you got it in time!
Sending you a big hug, I know how utterly gut wrenching it is. I think we get ourselves on an even keel and then that sort of news can just break you because it's so bloody unfair. I was the same, I was supposed to be the first to have a baby and it didn't turn out the way, so I really feel you. Have a moment, it's good to let it out and then you'll find your equilibrium again, it's good to be able to focus on your plan. Big hugs 💕
Love to all 💗

Thanks lovely @Deerdancer34 the support of this group is amazing 🥰 you’re so right as I was feeling pretty level headed and it just floored me. Love to all xx

Hi everyone, new to this thread. I think I’m out for this month which would be cycle 6 with Shehata, on intralipids, pred, omeprazole and progesterone. They suggested to me if I want to speed things up that I try super ovulation so I might do that. I was so optimistic about this month as I’ve had sore boobs through most of my luteal phase up until a few days before my period is due. I’m 36 years old and have been trying for 3 years. Had a little cry this afternoon and feeling a bit lost so might jump on here to chat with you ladies for support! ❤️

I am so sorry to hear this, but glad he has suggested superovulation. I was also negative a few days ago - this is my first cycle on his plan after six MCs and an almost six-year-old - and the disappointment is palpable. We are looking at IVF now as well if nothing comes of this, with PGTA testing (I am 42 so understand that I may not have many good eggs left). Sending you solidarity and positive vibes...

@TammyinCorkim so glad I found this thread so we can all support each other. Did Dr S say IVF would be a good option for you guys when you had the appointment? I’m sat here surrounded by meds and supplements, then I go on instagram and get bombarded with fertility specialists posting videos on what you should/shouldnt eat in different phases of your cycle. It’s just constant!! I think stress is a big factor for me - I have a very high pressure job and have only got pregnant previously when on holiday. That was why I was optimistic about this month as we were on holiday during ovulation. Next hol in November…!!!

I think stress is also a factor for me - I manage six people in my role and September / October is extremely busy... My only successful pregnancy was conceived after a Christmas break... Might be time to take a sabbatical! Dr S did not recommend IVF for us (and as far as I know, he isn't a fan of PGTA testing), but I was conceiving on first cycle until then! If these negative pregnancy tests continue, it may be more of an option... I can see why there is so much debate re: whether to take prednisolone and progesterone from ovulation vs 3 or 7 DPO vs positive test - I think the latter options would suit me better.

Gosh… I could have written that message myself. I manage a team of 7 and it’s just hectic all the time, v high pressure in front of clients, on stage presenting etc. I’ve spent my weekend working and at the same time considering if I can quit so I can focus on myself but I know that’s unrealistic 😂 my sector is super niche though so jobs don’t come up that often. Have you tried reiki? For me I think the best option is a well-timed holiday. Feels like now we are always timing our holidays around my cycles haha! I haven’t heard this debate before but I’ll look it up and do some research - thanks. I’ve been a bit weak to be honest and just done whatever Dr S has suggested so far

@pagey23hi, I am just jumping in here hope you don’t mind but have you tried Acupuncture? It really helped me with my stress and get pregnant in the past. I would go a couple of times before ovulation. I felt so relaxed after the sessions and optimistic! I did that after 3 years when I was not getting pregnant at all! After a few months I got pregnant naturally unfortunately I miscarried but managed to get pregnant again so it does help! Unfortunately all
my pregnancies for my second child ended up in a miscarriages but with the right treatment on the side it could work for you 😊(I was not under Dr S treatment plan at the time!)

Hi all, just reading through what has been said recently on here. I have been away for a while as I am constantly tired so I fall asleep early. I am obviously very grateful to be pregnant so i am not complaining.
A couple of things i wanted to mention though. On conception time, this pregnancy actually took my 7 cycles to conceive and every month I was on and off the pred. I am allergic to the intralipids so I couldn't have them and admittedly I didn't have to have other medication apart from low dose aspirin (which I feel like I've been taking for a lifetime!) but I guess what I'm saying is dont give up if it's taking a while. It can do so for anyone, immune issues or not. There is a lot of luck involved and obviously, like all of you, I was timing everything as carefully as possible so I knew when to start the pred. I will say that if this pregnancy does finally work out I may or may not decide to try for another but I may well try taking the pred from a positive test rather than from ovulation and see how it goes. Not that i am advocating for doing things that way but i am not sure i would want to be on and off the pred for several months again.

On the subject of others announcing, I get that. I've obviously been there. When I had my first loss, an MMC, a close friend had had exactly the same thing happen to her about a month before. She doesnt have immune issues but she has not had a successful pregnancy yet and is no longer speaking to me because of my current pregnancy. So sad but goodness I get it. Such a difficult thing to negotiate.

I hope all of you who are waiting have success soon, whether with IVF or otherwise. We all deserve it and my heart goes out to those who are struggling mentally with the journey. I have been in the dark corners and cried at announcements of others and my own losses and so i just wanted to send you all love and hope xx

@pagey23 A warm welcome to the place no one wants to be! Firstly big big hugs, I am so sorry it hasn't worked for you yet, its a bit soul destroying isn't it...but like the others have said, it can unfortunately still take time and everything has to be right, a good quality egg etc etc. I would definitely consider Superovulation but do be prepared it can still be a long journey, I think they say their highest success rate is Cycles 4-6. I liked it because it wasn't toooo invasive, it boosted my chances and took the stress out of planning. However it did take a cycle or two for me to work out the correct letrozole dosage and when to go for the scan which obviously all costs! But if you have conceived previously, I personally found it a good intermediary stepping stone to IVF but obviously everyone's journeys are so unique and personal, we can only offer our personal experiences! There's plenty of ladies here to help, console and listen - we all know what this is like and I found it such a huge help. Lots of love to you💗

@Objectiontime I hope you are well 💞 How many weeks are you now!?

Thank you and I'm 20 weeks xx

@pagey23 sorry you're here but welcome ❤ are you going to go ahead with superovulation? I must admit I do sometimes think I should have tried that but we went headfirst into IVF (not that its worked yet!!)

@Objectiontime I'm sorry about your friend, that's so hard. I'm hopeful that I won't get to that point and as always I'm genuinely happy for my friends, it just really highlights what you don't have when someone announces what they do I guess. I hope your friend comes around.

I'm also at a point of not wanting to be on and off the pred. My sleep is just so bad on it (obvs would deal with it if Preg) and it makes me have such a tight chest at night - does that happen to anyone else?!

In other news - had my follow up to our failed FET yesterday. The consultant essentially said I should stop taking Hydroxy as it can impact implantation (although I'm yet to find studies to support this but she was a good consultant). She strongly recommended I get a second opinion about using Hydroxy for recurrent miscarriage. I've stopped now and we're going to wait until November to transfer to have less of it in my body (it has a really long shelf life apparently). Weird. I hate how just seeing a different doctor can give you a completely different set of things to think/worry about. I'm not sure about the Hydroxy but I've been on it for almost a year with no conceiving and a failed FET so I kind of figured we might as well see what happens without it. Definitely keeping the pred etc in there.

@SWMum9 Are you still off it? Were you given advice from a doctor about it? I couldn't remember.

Love to all xx

Hi love, glad you had your follow up. It’s really overwhelming that all the information is different. I haven’t started taking the hydroxychloroquine again… since I’ve stopped taking it I haven’t had the irregular bleeding. I’ll see this month if I get a positive ovulation test again.

I didn’t conceive this cycle with my cycle back to normal but we head to Greece next week for some further tests so hopefully will know more then.

I’ve been reading today on the fb group that the protocol can actually hinder implantation? Which feels confusing. Pre protocol I had 2 pregnancies in 4 months.. now nothing for 10 months

@SWMum9 It is so overwhelming! I wish there was just one option for everyone haha. I hate all the decision making.

Wow Greece - are you going to Fertylisis? I've heard such good things about them. Do you have a link to the FB group? I don't have FB but might get one to join although I feel it could bring even more confusion!! I also had 4 pregnancies over a year and a half then nothing for a year since starting the Hydroxy.

I'm going to have a Hysteroscopy before next transfer, has anyone had one before?!