Immune/NK cells pred thread #31

Hi all, is it ok to jump on?

Where is everyone getting intralipids? I had to travel from Cardiff to Surrey last time, but can't seem to find anyone closer that offers it

@VenusStarr that is so annoying. You are so right re. The blood test results not being back on Monday if you got them done then. Very annoying. How are you otherwise? Have you done much Zumba? How come you are taking estrogen? Sorry if I missed it. I wish I had an update but there is nothing. I just came on to see if anyone had any good news but sadly not yet :(

@comingsoon786110 ive PMed you. Sorry for the 400 odd messages- it wouldn’t let me type it all in one neat message x

@VenusStarr no he hasn't suggested it. I am not too sure what he will suggest next tbh. I am adamant on not trying IVIG because it is way too pricey and I am not really sure of the other drugs he offers tbh.

I know what you mean about everything happening at once and it does take a toll on you. I become so cynical and its hard to move away from that. But hoping for light at the end of the tunnel for all of us.

@StillTrying10000 congrats on your bundle of joy!! I would love to know any info you can give me, the more the better! What plan were you on? How brutal is the drug? How expensive? What was your miscarriage story( if you dont mind sharing). Any info would be a huge help ✨✨

@comingsoon786110 yes it was my miracle drug after all else failed and we thought we’d have to stop trying. It is brutal though so defo a last resort, let me know if you have any questions about it.
@VenusStarr hope you are hanging in there and things start going your way soon xx 😘

Thank you @VenusStarr.
Hope you're doing okay 🥰🥰

Has anyone had/ know anyone who has had tacrolimus and had a successful pregnancy?

@VenusStarr Hey your sadness is really coming through stronger than I've seen it before from all your previous msgs. I hope you are OK. You've mentioned a few times you might be nearing the end of trying, which is where I am, and I really sympathise especially when you're dreaming of babies. I keep "testing myself" and holding friends' babies to check whether I still really REALLY want one or whether the need is wearing off. Coming off the meds has made me less manic about it all, I hope that is helping for you.

Hi everyone 🩵🧡

I hope all is well.

Apologies for being super quiet on here. Hubby and I have just purchased our first property together and have been super busy with the move- it's literally taken over our lives.

I have a zoom appt with RMC on the 18th of this month to discuss the biopsy results that I had done during my hysterscopy in June. We will be discussing what comes next but I am pretty sure they're not going to have much plans for me. I have an appt scheduled with Dr S on 02/08/2023 for what his next plans are for me so might be trying again from next month, let's see. I am going to start taking my hydroxy again from today so its in my system at least 6 weeks before we start trying.

I have been doing some research on tacrolimus and apparently its not safe at all during pregnancy. I know that's the case for all the medication he prescribes but this one in particular seems to have a lot of precautions which is worrying me as this is probably the next step in our treatment plan.

How is everyone else doing? I have a lot of posts to catch up today. First day back in the office today for me as well since the move!

@star2022 thank you for that, very helpful! AHH I hope this cycle goes well for you. I hope the 4-6month time doesn't put too much pressure on you! IVF is still an option for us, we have a couple of embryos but I'm not convinced on their quality. But I expect they will get used at some point. But not now, I'm fed up with all of it. And yes, CRP do IVF alongside kings. After the IVF fail he suggested I add hydroxy to the mix on an empirical basis or just try again on the same plan. Tbh, he has been pretty honest in saying it's hard to know and I sort of went to him in the first place thinking "I wonder if it's the immunes" but he said he doesn't know. Re the dhea I don't know re steroids actually. He didn't say it would be a problem but he didn't really say much about it tbh.

@VenusStarr I'm sorry with how you're feeling. Are you doing anything tomorrow or are you just going to try and get through the day? I really hope Zumba lifts your mood a bit! I can totally relate to you avoiding friends. I have actually considered never meeting up with my friend again!! Brutal or what!! (Although we do live far away so it isn't impossible!) Thank you for explaining your dose etc. What concerns you about high stimms? I was on high stimms. My amh is around 3. :( I did manage to get 9 eggs, 3 blasts but I def do think the issue is egg quality for me with that low amh so I don't think there's much I can do. Hence why I am wondering if I give letrozole a go and aim for more follicles. But then that could be like going backwards as I did 3 iuis 5 years ago and none of them worked. So realistically I think things are coming to the end for us.

@Zest11 Hey nice to hear from you! I'm so sorry about hearing about your friend, I can really sympathise with that feeling as my best friend also has had 2 kids now (got pregnant first time trying too both times!) even though we've been trying for longer than her and still waiting for our first. It really is a kick in the teeth and really difficult to come to terms with. Your feelings are totally valid.

What had dr s suggested for you to try next time? Do you have any embryos left? Is IVF still another option for you or are you a bit fed with it at the moment and want to try SO?

So when I went to see him initially, he did say he doesn't see why we can't get pregnant with superovulation as tubes are open etc but to give it 6 months. Usually there is 80% success between 4-6th month as it can sometimes take time tweaking dosages of meds and trying to get the scans on the right days/trigger. Fortunately for me, I've responded well to 5mg letrozole (which I think they just start you on to see how you respond) With 5mg, I've managed to get 2 dominant follicles each month and my lining has been perfect each time. However, I'm now on SO 4 so its getting a bit tiring now knowing that it always looks perfect but somehow still not working, but i'm still hopeful that we're now in the 4-6th month window so keeping our fingers crossed. I take Letrozole from days 2-6 of period, I then book a scan between days 7-9 as thats my window they've told me to book, I usually end up having the trigger shot at the clinic as my follicles are pretty dominant by then, I have intralipids on the same scan day, and then 2 days later I start Cylogest and steroids, test on 10dpo and stop meds if not pregnant and then repeat. I had my scan yesterday and had 2 follicles and trigger there and then, but have been told to increase it to 7.5mg if this cycle doesn't work to try and maybe get 3 follicles next time.

I also didn't know CRP now do IVF cycles. Dr Edge told me yesterday that this is an option after 6months of SO. They work with Kings fertility and they offer the whole IVF cycle with immune meds - Mr Jan at CRP looks after you. They also offer a discount for those who have had 3 consecutive superovulation cycles which is good to know.

And thank you for the info regarding DHEA, I do need to look into it but not sure if I can take it with steroids? Did he mention anything like that to you? I do think I need it as my libido is at 0, and I think I was going to take 25-50mg how much are you taking? x

@HopefulH the steroids also made me suffer from terrible insomnia. I took them for 16 weeks in total I think (including weaning off) and my day would start at 4/5am. It's tough but hang on in there. The worst is the moon face lol but luckily that kicked in for me when I only had a few weeks left of taking them. I had to renew my driving license at that time so now i have a lovely reminder for 10 years of my moon face 😂

Just remember its all for what you want most though. I really did find the medication side of things difficult esp the progesterone. You can do it 💪🏼 xx

Hi all, sorry I've been quiet. I've been taking a break from things. But I have been triggered. My best friend recently announced she's pregnant with number 2. She struggled with miscarriages before having number 1 so I am relieved she didn't have to go through it all again. But it hurts, it's really upsetting that she's pregnant again and I'm not and we've been trying way longer than she has (even though conceiving was never her problem).

I've been reading your posts about letrozole and super o. What is it that Dr s does? What day cycle do you start on and how long do you take it for? How does he decide your dose? What dose do you take? I dunno whether to just have a go with that. But saying that I have made no effort to order any meds that Dr s recommended after the failed ivf cycle. Tbh, I felt pretty disheartened when his plan didn't work for me and am still undecided about next steps.

@star2022 I remember a while back you mentioned dhea. I got mine tested at a Nuffield hospital and it was 3 something so lower end of normal and I got some biovea supplements online. Not sure what they're doing to my hormones, something, as I'm getting a bit spotty and libido has increased! I asked Dr s about dhea and he said the research doesn't seem to suggest a higher live birth rate (but higher eggs retrieved and pregnancy rates) but then he said it wouldn't do any harm. But he didn't recommend a dose o anything. I thought I would share with you as I remember you looking into it. I hope you are settling into your house okay.

@HopefulH thank you for the quick reply!

Thats how I felt after my second as it was so similar to my first. I was very surprised when it came back as Turners. If this one is also abnormal I don’t know what to think. My current consultant told us that of women who have 3 losses in a row, for 33% of them they will all have been abnormal. I do also so far get pregnant fairly quickly so wonder if I just accept anything.

I have listened to this podcast and I see Rachel at the Fertility Suite :) Unfortunately I don’t think he will take much from it as it is from someone offering the treatment. He is looking for unbiased research. I may try and get us along to a consult at least so he can ask questions. I’m not sure if we would go with Dr S as it’s scary to let go of heparin when I’ve been told I need that but his results are good!

I think my partner is primarily worried about affect on baby. He’s read it can lead to defects (all I’ve found is very small risk of cleft palate) and our consultant said Autism which I have found 0 evidence of! Husband also said something about suppressing my fertility…no idea where that came from, I think to do with people not 100% knowing the ideal level.

Are you planning on doing anything different for your endo (like a lap?), or have you been told the immune protocol will take care of it? I’ve also been told it can affect egg quality.

So confusing having to make all these choices for ourselves.

Hi @MamaW05. Very sorry you've had a third loss.

I think if you know you have endometriosis this is definitely something worth looking into - as I've read so much that links immune irregularities and endo. It's a chronic inflammatory condition so makes sense the bodies immune response might go into overdrive. I'm currently looking down this path now - but am also on an immune protocol with Dr Shehata.

I think to have three losses in a row, and all missed miscarriages (same as me) there has to be something going on besides genetics. That's what my gut is telling me - but I've never had any genetic testing done on my babies - just karotyping which came back all clear. I also had a successful first pregnancy but my little one was born very small.

Have you listened to the podcast episode featuring Dr Shehata on Audible - I think it's called the fertility method. Might be worth getting hubby to take a listen?

As you say, there is limited research out there due to the difficulty of carrying out such research on pregnant women. But Dr Shehatas results speak for themselves and I believe world-wide immune treatment is more common. We are so limited here by the NHS!

Is your husband concerned for your safety or safety of baby?

Hope you manage to persuade him to looking into immunes, if that's what you want. It's so difficult when you are not on the same page as your other half so I feel for you! X

Hi all

I’ve lurked a while on similar threads but have now just suffered our third loss and looking for some advice from those who are in a similar position maybe further on in their journeys.

we’ve had 3 losses in the last year - 7.5w (missed til 12 week scan), 8.5w (missed til 12w scan, hb seen at 8 weeks, confirmed as Turners), 6w (missed til 8w scan, no hb seen at 6w scan, sent for testing). I would also mention that my first pregnancy in 2020 was successful, just high bp at the end, and I am very lucky to have an almost 3 year old.

for the most recent loss I was on heparin as testing showed I have factors making me more susceptible to clotting. I was also on progesterone from 4dpo and baby aspirin from 6w.

In my mind, if this failed my next step was immunes. However, my husband is very data driven and because of course no one researches women’s health all he sees is large official bodies saying it’s unproven and not safe, specifically steroids. Having been on these forums a while I believe the risk is very minimal, but does anyone have any research/studies/clarification from a professional that I could share with him? I can’t find anything concerning safety online. I am with St Mary’s who don’t believe in immunes and I think if baby is abnormal they and my husband will say try again with current protocol. I get the logic that we won’t have been able to see if blood thinners worked but I am scared it’s another try and if it doesn’t work we will only end up going to immunes anyway. I also have a low AMH so I worry about time.

I also have silent endo so planning on asking about maybe a lap to investigate extent of it. Other than that I believe I’ve had all other tests!

any insight appreciated!

thank you x

Hi @Deerdancer34 so sorry to hear about your ectopic. I hope you have support around you during this difficult time.

Hi @VenusStarr thanks for checking in. I now have an appointment with my fertility doctor next Wednesday to discuss a new IVF cycle, then my appointment with Dr S on the 31st to discuss next steps without Humira. I hope he’ll be flexible enough and have an alternative plan for me. All being well my plan is to commence my new IVF cycle around September/October time. I won’t have time to try SO now due to Dr S being away in July then I’m taking time off in August. Hope you’re doing ok and your DH too.

Hope everyone is doing ok. It’s lovely stories from people like @Trgf55 that keep us going xx

@HopefulH I am hesitant to recommend drugs to someone so I would recommend checking with your doctor first but I find melatonin tablets counteract the impact of steroids for me. (Well they did the last few weeks anyway). I’ve just had a frozen transfer on Friday so I have stopped taking it now and I’m still taking the steroids. Though I’m not on 3 lots of progesterone a day and I think that’s helping me sleep okay.

I also know some people find after a few weeks the effects of the steroids settle. Bloody annoying tablets to take though!

Genuinely concerned how I'll ever get pregnant whilst on steroids... they make me feel so wired and I don't sleep! Averaging 5 hours sleep... any positive stories of others who find the steroids make them feel like they're loosing their mind but have still managed to get pregnant? Feeling so on edge this morning! Day 5 of 10 taking them! Also didn't help that my husband was snoring so loudly last night... I had some very angry feelings towards him which is also not like me!

@Trgf55 thanks for the encouragement re high doses of Letrozole! It's a relief sometimes to come on here and see some positive outcomes because when you're in the middle of it all it can feel so hopeless sometimes.

@Deerdancer34 I'm so sorry to hear of your ectopic. Sounds incredibly traumatic and so much to take in in such a short amount of time. Have you got any counselling support etc.? I have always found it's once things have calmed down that I really struggle, because I think when you're in the moment and having to deal with physical things the mental side takes a back seat for some time - and then it all lands! So yes, hope you have plenty of support and recover quickly from the meds!

Happy Monday all 😊 Here's to another week feeling hormonal as hell and roided up. Hope everyone is okay x