Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

Thank you @Annie808He's going to get started on them, the clinic price is the same as direct from Fertility Family. Just waiting to hear on the doctors availability- apparently he works 2 days a month at crp! Good job we're on a bream anyway. Hopefully a good 3 months on the impryl will kick in before we restart ttc x

@VenusStarr yes 1 tablet per day. It can only do good as @Annie808 says. So no harm in taking it whether its needed or not. It seems any issues with men are fixed much easier than with us ladies 🙁 also i think CQ10 can be beneficial to men too. I took 2 of those a day (max strength) and im pretty sure it helps men too.
I hope you're doing ok. Xxx

So me again still confused over all this testing!

This forum has been more useful to me than actual consultants!

Can anyone tell me what an endometrial biopsy looks at? Is it just NK cells or do they look at the structure of your lining etc…This would be at Dr Gorgy’s clinic.

I would have asked in consult of I had known that was going to be part of the recommendation!

thanks 🙏

@Sezmarelda1 I'm feeling quite anxious and nervous as scan day is approaching! Awww rainbow outfit 😍that's soooo adorable ❤️. You are half way through, that's so exciting! I really do wish you the best and really look forward to more updates on your journey here 😃 xxx

@Zest11 awww thank you 🙂. Yes the countdown is horrible 😩. My next scan is Friday and it feels like it's been forever!! I really don't understand why nhs say everything is normal and then when you go private they say oh you got pcos or this isn't right etc etc. I mean that just makes no sense to me. I know you say you have "only had 2" but thats still traumatic whether u have 1 or 20. I remember my 1st miscarriage, I was traumatised and took me 6 months to recover mentally and physically. So I'm very sorry to hear that you have been through this 😞. I've never had ivf. Dr S never suggested it in my first pregnancy with them as I got pregnant straight away on his plan. I really thought I would just get pregnant again quickly if I went back but this time it took 10 months and I have only been seen by Dr Edge. She did suggest it and to be honest we were going to actually try the ivf route in January but whilst I was on a break from the meds I got pregnant on a natural cycle which quite shocking. Obviously it's early days and we dont want to get too excited yet as we are no where near the 12 weeks mark. Plus I'm 41 so anything could happen 😩. How long have you been trying? And have you been to see dr s? What have they suggested?

@InvisibleDreamer 3k?!! Wowzers!! I actually have no idea what all those tests are. I think I spent quite a lot with Dr S too initially but I'd have to check the paperwork to see what exactly they tested me for as I can't remember 😬. For this pregnancy they charged less as they take the other tests into consideration but funnily enough I've still ended up paying more in this pregnancy bcos of not being able to get pregnant 🤷🏽‍♀️.

@VenusStarr @Tgrf55 my husband was seen by Dr Gordon before my 1st pregnancy bcos they were not happy with the dna frag results. They told him to take impryl for 3 months and apparently to improve sperm quality to ejaculate at least 3 times a week which we didn't know about 😂. He wasn't too pleased about that as it kinda became a chore rather than "having fun"! It was horrible to be honest 😂. We were also told not to get pregnant in this period. Dr Gordon also did a physical check on him. They redid his frag dna and it was a massive improvement so they told us to try that month and shockingly I got pregnant. They were shocked too as they weren't expecting to see us that quickly again 😂. This time they didn't ask him to do one which we were both confused about bcos we had been trying for nearly a year 🤷🏽‍♀️

@InvisibleDreamer aww yes HG is defo brutal and debilitating and one of the most horrible thing a woman can go through! Us women are defo strong to still try again after all that 💪🏽. It's so bizarre how we find the strength. But pred has really helped, I really didn't have any symptoms in my last pregnancy bcos of the pred shockingly! Hopefully the meds will help you too xx

How did your scan go today @Sophi81 ? It was good news at mine, baby is measuring around the 23rd centile now so they're going to leave it until 32 weeks to do another growth scan. They think the baby is just naturally small as they can't see anything of concern otherwise.

For those of you who have been on extra folate, how long did you carry on with it? I have folate in my prenatal which I’ll continue with, but I’m also on 1000iu metafolin, 400iu methylfolate, methylfactors and nicotinamide riboside. I’m due to stop all four additional supplements tomorrow and feel a bit 🥴

Oh and for clexane injections, I’ve been advised to do thighs from now on, but it’s agony. I find tummy much easier but fearful of carrying on there now. Any tips? Thanks so much!

@Sezmarelda1 awww that's wonderful news 😃! I am so happy for you. The scan went well thank you. I'm now measuring 9+3 weeks instead of 10 weeks but we know that's most likely because I ovulated late so it will be a week behind. Dr Edge was happy with everything so far. I was so nervous but glad I've had the reassurance that everything is ok for now. Did you have the nuchal and harmony test done by crp? They will do them at my next visit on the 28th dec but I'm so nervous that something will crop up 😩. Dr edge said I should feel better once I've passed the 16 week stage as that's when I had one of my losses but that's a long way away yet 😬 I'm also just looking forward to coming off the meds too as I'm on so many especially the injections but that won't be till next year now 😩. The steroids have really blown me up and I have a moon face 🌝 but I guess it's only temporary.

Hi everyone, hope you are all doing okay?

I had my follow up appointment with Dr Shehata last week and was found to have aggressive NK response and raised IFN-gamma, so have been put on the complex plan. I’m also being treated for CHI. I’m in Phase 1 of our protocol at the moment which is humira and hydroxychloroquine. Anyone else have the humira injections? So that’s all fine and doable. But looking at the costs of Phase 2, which includes intralipids each month, plus he wants me on super ovulation - I know we can’t afford to do this all with him. I don’t fall pregnant quickly at the best of times and anticipate we could be in for a good wait.

Has anyone here said no to Intralipids with Dr Shehata? I can get them for £200 from a local fertility clinic instead which would save us a fortune but means I could still access intralipids. Is this something you would be honest about with Dr Shehata? I can also do super ovulation on the NHS and book private follicle tracking scans with this same fertility clinic if needs be, and again it would make the whole thing affordable just about.

Has anyone else opted out of some of what Dr Shehata wants you to do for financial reasons and he has been okay about it? I know I need to go in armed with what we can say yes to at my next appointment in the new year, and I’m terrified he’s going to write us off if we say we can’t afford all the ongoing treatment costs. I’m fine with all the scans once pregnant etc., it’s more the costs involved whilst ttc I know we can’t absorb monthly.

Tia xx

@HopefulH I'm glad you got answers although I can appreciate it's overwhelming. He'll be fine with you doing superovulation elsewhere, but I wouldn't tell him about intralipids elsewhere- will they do it without a prescription? I've known people just not do intralipids due to the cost.

@Sophi81 I'm glad you had a good scan ❤️

We had dh's sperm dna results and he needs to see Mr Gordon (I can't remember if I posted here, apologies of I have, can't scroll back) he's managed to get an appointment in January. To be honest, I've lost my fight with all this and I'm resigned to it not working for us. We've been doing it too long now, 5 years, 6 losses, 2 years of treatment with Dr S and still no further forward. We're not ttc again til the spring anyway.

Hope everyone is OK xx

@VenusStarr thank you x I hope you are well. I found Dr Gordon quite nice. I think it's always good to check the partners too as generally everyone just things the issues are with the women. I have to say after being prodded and poked for 4 years by drs and hospitals and having losses I really was at a low bcos I felt I was the problem. No one checked my husband except for sperm count test which doesn't really count. Anyway when Dr S requested my husband to do the test I know this is probably a horrible thing to say but I felt a bit relieved when they were not happy with his results bcos I had some hope that maybe it's not me! And he had to see Dr Gordon and follow his treatment plan for 3 months whilst I just put my feet up 😂. Hopefully there may be something Dr Gordon can do for your partner. Good luck with the appointment. I will be thinking of you xx

Hi all,

I hope you are all okay.

I was wondering if any of you could please offer me some advice or words of wisdom.

I first started seeing Dr S a year ago. I've had 1 chemical pregnancy this year on the complex plan at which point we switched to superovulation and added Hydroxy and intralipids.

I had three miscarriages back in 2021, 2 Blighted Ovum and 1 chemical so never struggled to get pregnant before but now I just can't seem to get pregnant! We have done 4 cycles of SO in total now, although not consecutively. Has anyone else experienced this and did you eventually have success? Also, my NK cells are on the rise again so I need to take another dose of Adalimumab which means we can't try next cycle. Feeling really deflated and would love to hear some positive stories!

Thanks everyone in advance. X

Thank you @Sophi81 it's really knocked me, I feel so detached from it all now. The impryl is coming today, so we'll both take it I think. I've read some positive things for women with low amh. It's reinforced us taking a break is the right thing. The thought of ttc again terrifies me though.

@Freybae im sorry. Ive been under Dr S over 2 years now and had a chemical and a MMC (healthy baby), so my protocol is intense. Before the diagnosis we did conceive 3 pregnancies in 2/3 cycles but our first loss took over a year to conceive. I don't have a success story sadly and we're taking a break now until the spring. Sending love ❤️

Thank you, @VenusStarr. I'm really sorry you've had and are having such a tough time. It's really hard. Sending love x

Really sorry to hear what you've been through @Freybae I'm afraid I can't help as I'm quite newly on the complex plan, this is actually my first month on the plan. I too usually get pregnant quickly so it'll be interesting to see how things change now I'm taking all the drugs. Have you got an appointment with Dr S to discuss how you're feeling about everything?

How is everyone else doing?? Any new BFP to share?? How are all the pregnancies going? Would love to hear some positive stories to keep us all going. Xx

Hey everyone.

@VenusStarr sorry you guys have another thing to investigate. From what I’ve read a lot of Sperm DNA frag issues can be fixed by lifestyle though it’s good to see a urologist in case there’s a blockage or varicocele. My friend‘s DH went to see Jonathan Ramsay as he had really really high DNA frag and other sperm issues and they found he had a blockage. He recommended surgical sperm extraction instead of normal ICSI and they had much higher blastocyst rates. I’m sure that’s totally unnecessary in most cases though.

@Freybae Sorry I’ve no specific advice but I’m sure I’ve heard a few people on this thread and a miscarriage Facebook group I’m on say they have found it harder to conceive on the meds. Is IVF an option as it’s been a year?

We are doing ok, still very anxious about something going wrong but we have made it to 17 weeks now on Dr S’ plan and I’ve stopped most of the meds now. Had the last dose of intralipids last week.

@Freybae @Maxime34 wishing you both all the best on your plans. I can’t comment on Dr S as I followed a protocol set by The Evewell and Dr Gorgy. But I’m further on than my last five pregnancies. Now hoping to get further than my first loss, which was at 16 weeks, and I’m currently in week 15 so it’s an anxious time. I just keep expecting something to go wrong especially after developing a UTI this week. Common I know but reassurance scan tomorrow.

We went down the IVF route after seven years of secondary infertility and recurrent miscarriage. I’ve been treated for immunes with pred and intralipids, clotting with aspirin and clexane, and I’ve also been on oestrogen and progesterone as well as levothyroxine and metformin. Quite the cocktail and who knows what worked but so far, so good. My partner was seen by Mr Ramsay for high DNA frag and checked for varicocele. And we had ICSI then PGT-A. We both saw Anna Firth, a nutritionist with Mel Brown, and she’s supported us through every part of our treatment.

I’m guessing nobody has been on the same folate protocol as me? I stopped taking them all after a bit more research but felt so anxious about it. The clexane I’ll carry on either side of my tummy for now as it’s so much easier and less painful.

@Freybae i've also just started on the complex plan, but I have read that some other consultants prescribe progesterone and pred for an ‘unfussy uterus’ where it’s suggested that the uterus is letting unviable embryos that should be rejected implant, so I guess one of these meds might make the uterus more fussy?!

@Maxime34 I’m taking all the meds as of a few days ago. Not v confident for this month tho, as I ovulated much earlier than usual on Day 12, usually I’m 16! So I don’t think we dtd enough pre ov! Don’t seem to have any side effects yet from progesterone or pred tho which is good. Have you started you too?

@MyEasterEggs amazing you are 15 weeks! Hopefully all will continue well!
i actually wondered about Clexane, as it doesn’t seem to be in Mr.S plans. What does it help with in particular?

@Annie808 I think clexane is often prescribed to recurrent miscarriage patients. There’s been a clotting patterns to my losses, but I also have PAI-1 and MTHFR gene mutations which when combined increase the clotting risk.

@MyEasterEggs ah I see thanks! I haven’t been diagnosed with any blood clotting issues, but I have heard of the nhs just giving it to recurrent miscarriage patients regardless.

Hey @Annie808 it's lovely to hear from you. I'm 4dpo so same as you have been taking the meds for a few days now and so far no side effects but I think they probably build up over time so not counting my chickens too soon. Will be testing at 10dpo next week but trying not to get my hopes up too much as the chances of things working out the first month must be really slim. At least we all have Xmas to enjoy and take our minds off the waiting game!

@Freybae Hello Freybae. You wanted a success story. I can't claim mine is a success story YET but I am 9 weeks pregnant after three miscarriages. All of them died at around 6 weeks and I never saw a heartbeat. Since being treated by Dr S, I have now seen a heartbeat twice, and I had an NHS scan today too and baby is doing well. I also fell pregnany, shockingly, the first month on his plan. The first time it took me 8 months to get pregnant, and then after the first miscarriage I fell pregnant quickly each time.

Anyway, I am not out of the woods yet but things are looking positive!

Thank you to everyone for your replies.

@Maxime34, good luck on the plan, wishing you success. I was in clinic about a week ago and I ask almost every time why it's taking longer now but they don't seem to be able to say why.

@Ifitistobesaid, I think IVF will be our next step. Really wanting to give the superovulation a chance before we go down that route but I probably do need to see my GP about possible IVF. It's very nice to hear your success story.

@MyEasterEggs, I hope your reassurance scan went well today. I can only imagine how anxious you must be feeling after your previous loss.

@Annie808, that's really interesting and I did wonder if my body was just getting pregnant with crappy embryos.

@Welshlady89, congratulations. You give me hope!