Immune/NK cells pred thread #32

[VenusStarr]

Hi everyone. The last thread is filling up. Have tried to tag everyone who posted on the last few pages, but feel free to join / tag anyone I missed.

@Gizmo1983
@fleur89
@Sunflower360
@MotherOfShihTzus
@lozzmax
@HopefulH
@kea1990
@Sprinkleofbabydust
@Newbeginnings22023
@star2022
@RumandSpinach
@Ems123456789
@MamaW05

Love to all ❤️

@Gizmo1983 that's great news, so pleased for you. But I also know that feeling of having to wait and cycle after cycle going by without a chance to get pregnant and it's really hard to keep being patient. August not that far away in the grand scheme of things though, and hopefully you'll get a lovely perfect embryo to transfer ❤️ Is there anything nice you're doing in the meantime to keep your mind occupied? How long does the testing take? Xx

Thanks so much @lozzmax how are you feeling today? Yeah it’s the sensible option that we’ve gone for. They said 2-3 weeks depending on how busy the lab is xxx

@Gizmo1983 definitely feeling better today. I decided to take the day off (I work for myself) to just decompress, walk the dog, sort out the he house etc... and it's really helped. I also spoke to someone who's had a very similar journey to me and she's given me a lot of hope that things might turn around for us. I'm away on a hen do this weekend right over my ovulation window which I'm gutted about - we'll still try but definitely away for the most fertile days without my husband 😭😭😭

@Gizmo1983 that is great news! Keeping fingers crossed for the third one too!

@lozzmax after reasonable amount of fertility issues in my closest girl group we’re now very good at the ‘just wanted to let you know, appreciate this may be tough to receive but I love you and we don’t need to talk about it more than you want to’ type message now, but I still get blindsided by others from time to time. Had two people in my team tell me they were pregnant while I was going through my last loss, which was absolutely the right thing for them to do - I’m their line manager and there’s stuff we need to do employment wise but still doesn’t prepare you for the tears prickling at the back of your eyes!

@Jecca88 @lozzmax I’m fairly sure my scan is with Dr Edge, although am now second guessing that. It’s on a Thursday which I don’t think is a day that Dr S is usually at the clinic! I had my last appointment with her so we could get started with phase 2 this cycle so would be nice for it to be her, although can’t help but think I will be expecting the worst until told otherwise either way.

Lines on tests have continued to get darker and spotting seems to have stopped now I’ve come off of aspirin, so a tiny glimmer of hope is now starting to creep in which I think I’m more scared of than anything tbh!

@lozzmax im so glad you’re doing a lot better and there are tons of miracle stories out there we just need to join that club 🥲.
@elarcoiris thank you so much and I’m so happy for you that things are looking hopeful do you have a date for your scan xxx

@Gizmo1983 Yeah, it’s next Thursday (27th) - booked the first slot of the day as know from previous experience it’s not very fun trying to keep my mind on work knowing it’s coming later in the day 🙈

@elarcoiris thats a brill idea as otherwise you will just be worked up and stressed this way you get to get up and find out xxx

@elarcoiris one of my friends told me that she used to make a positivity board ahead of her scans with dr. S. She'd cut out bits from magazines - photos, pictures and text, and focus on seeing a strong heartbeat. She said she'd hold it and look at it all the way there. I thought it was a great idea, and if I get to scan stage again, i'm definitely going to do it x

Hi @Jecca88 thanks for your message. It’s true that the worry-free period can be short lived but I’m trying to prolong it for as much as possible! And yes I’m planning to hit the beach on the Mediterranean which I’m really looking forward to, between Egypt and Cyprus, although it’s looking to be too hot over there already! Let’s see. Hope you’re ok xx

@Gizmo1983 that’s great news! Fingers crossed for more good news for your PGTA xx

@Gizmo1983 that is such great news! 3 out of 4 is brilliant.

@lozzmax i am glad you decided to take the day for yourself and also those stories where you connect with people to find similar stories and hope are so great and positive.

@Newbeginnings22023 a summer in the Med sounds amazing. Just what the doctor ordered.

I thought I had finally started to feel like the hormones were leaving my body and no more achy boobs, tiredness and nausea since my MVA nearly two weeks ago on friday, so decided to do a pregnancy test and it's still positive 🙁 - its strange to wish for a negative pregnancy test - but i just want to get back to being myself. I know it says three weeks - so i will try again next week.
If i still have HCG in my system - i won't be ovulating anytime soon?
Really hoping i don't have any POC left.

I might try and have some accupunture or reflexology.

Hi lovelies

Just gearing up to start testing in the next couple of days. Tomorrow will be 8DPO so I'll probably start testing tomorrow through to Tuesday when my period is due.

@Gizmo1983 so glad to hear the retrieval went well. How are you feeling now? Keeping everything crossed for you.

@Jecca88 big hello and sorry for your losses! I’m on all the same meds as you except I’m on the Prednisolone also. Did Prof S say that the Pred would react badly with the Sertraline or is it purely because of the possible mood side effects with Pred? When you did the testing, what was shown to have the strongest positive result (assuming you have high NK cells)? If Pred worked well could you ask if there’s an alternative to the Sertraline that you could take that wouldn’t interfere with the Pred? Sending lots of love. My partner did the sperm DNA frag test and was considered normal by the lab and borderline by the clinic so he had a urine test to rule out infections (all clear) and a follow up Zoom consultation with the male fertility doctor at the clinic. It was £250 to be told to keep alcohol to no more than 15 units a week and for him to be clearing the pipes every day or every other day in the lead up to ovulation week. I’m a big fan of Dr Silva Edge too - she instantly made me feel at ease. Acupuncture/Reflexology sounds like a great idea.

@lozzmaxx I’ve been thinking of you. So sorry you had another chemical. Great that you got the Pred from your GP and totally understand on the difficulty getting to the clinic so frequently. How are you feeling on the new meds? Hope you can have some fun at the hen do this weekend.

@elarcoiris how are you doing lovely? Glad to hear the spotting stopped. Did the clinic recommend that you stop the aspirin when the spotting started? Best of luck for next week.

@VenusStarr so lovely to hear how you’re feeling and that others are noticing a return of your sparkle.

Hi everyone, hope you're all OK.
Had my follow-up consultation yesterday and it went fairly well.
My consultant didn't seem against going ahead with another transfer and we asked would he be against us transferring the remaining three embryos together, he said that he wouldn't be against it and he wrote it in my notes.
The remaining embryos would be warmed altogether on the day and be monitored to ensure they were coming back to life as they should and if they all did we could transfer them.
We just thought with it being most likely the last time then go for it, obviously we know the risks involved, but we have come this far in the journey.
Protocol would remain the same, apart from using buserlin this time instead of the spray and adding in lubion aswell as the progesterone pessaries.
Have had a counselling session today which was good and helpful, probably have another session before the transfer.
Like to get the ball rolling soon if possible so that too much time doesn't pass by. Xx.

@Thornters Keeping fingers crossed for you over the next few days. I didn’t get a faint positive until 11DPO this cycle so don’t worry too much if your tests are negative to start with.

I’m ok - just trying to maintain some kind of balance between not feeling too anxious or getting my hopes up. Only one week to go until my first scan and work is VERY busy at the moment so that’s keeping me occupied! Yeah, they suggested I stop taking the aspirin for now to see if it stops the spotting, which it does seem to have done. Not sure if they’ll suggest I go back on it or not, will ask when I go in next week.

@Rainbowsunshine81 that sounds really positive. Do you know when you could schedule the next transfer?

@elarcoiris thanks so much! I tested today and it was negative but I expected that as I've only ever had one positive this early on. 5 more tests to go so keeping everything crossed but also trying to not overthink it. We're off tomorrow to go to an escape room and out for lunch so that's a nice little distraction. I need to plan more in for the weekend so I don't think about it so much. Glad you're able to focus on other things too at the moment. The wait between 4 weeks and 6 weeks always feels more torturous to me than the wait from ovulation to testing. That's interesting re the aspirin as I've seen a few people say this was the case with the spotting. That's a big fear of mine as I didn't have any bleeding with the only full term pregnancy I've had so I'm worried that any spotting would send me into a tailspin. I'm so pleased that stopping it seems to have done the trick for you. Would be good to know if they tell you to start taking it again. I feel like we're all counting down the days with you until next Thursday. Keeping everything crossed.

Hope everyone gets to enjoy the sunshine this weekend x

@Thornters It would have to be if possible when my son finishes school for the summer holidays, as I don't really want to take him out of school again. X

Please can I join? I’ve been lurking for a while. I’m grateful for this thread already - I’m sad to read about your losses and struggles but there’s glimmers of hope and genuine care for one another, as well as a wealth of information. We have one DC and then two miscarriages- I seem to get pregnant remarkably easily but can’t sustain anything - i see a heartbeat around 8 or 9 weeks but both times turn into a missed miscarriage around 11 weeks. Testing took a while but has pointed to high NK cells and slight issue with my thyroid. Endocrinologist has prescribed a tiny dose of levothyroxine to optimise things for pregnancy. My vitamin D was low so trying to boost that too. Currently living overseas so I’m not under Dr S or any other recognisable names. We’ve just been given the all clear to try again, finally. I’m 38 so I feel the clock ticking. Just waiting for ovulation - using OPKs and SMEP. My doctor has prescribed what suddenly feels like the kitchen sink after all this time for the second I get a positive test - a steroid (maybe it’s predisone), clexane, progesterone (oral though), aspirin and tacrolimus. Has anyone used tacrolimus? He was going to prescribe a few doses of humira but the cost difference was substantial and he said that the effect was similar. He is also recommending several intralipid IVs - please can anyone share any experience? How did they make you feel? Did they take a long time? Expensive? Anything I should check out about dose? I’ve had hyperemesis with every pregnancy so far so I’m apprehensive of feeling rubbish on top of that. Hoping it’ll all be worth it in the end.

Welcome @v60! I always say when talking to people who’ve had miscarriages that it inducts you into a secret club of the most wonderful women who wish that nobody else ever had to be here, and that is never more true than for this group. I’m finding it so helpful to have you all to talk to, particularly as I’m not ready to tell anyone other than my husband in real life!

I’m on Dr S’s “complex” protocol so quite a cocktail of things but sounds broadly similar to yours. No particular negative side effects tbh - intralipids have been fine (expensive, takes about an hour but have taken my laptop with me and just worked from the clinic, no side effects that I’ve noticed), and I think the steroids are making me run quite warm but also it is (sort of) summer, so who knows?! Otherwise not a huge amount to report, a few standard pregnancy symptoms but if anything less severe than previously which I’m trying not to overthink as have been told that the steroids can suppress nausea and am on Omeprazole which means I’m not getting my normal heartburn.

Apologies for the monologue, but hopefully some of that is helpful. Very happy to answer any other questions you have, although know some of the other ladies here have more experience with it all than I do (was lucky to get a positive test first cycle so just keeping everything crossed that the drugs are doing their job!).

Thankyou for your welcome elarcoiris, and for your monologue- definitely reassuring and good to know you’re not experiencing any intense side effects. Reading that steroids can suppress nausea is particularly encouraging given my history of hyperemesis! Would you mind sharing how much your clinic charges for intralipids? How many have you had/going to have? Do you know the dose? I read somewhere about some clinics diluting it so it goes in easier but then that surely means you’re not getting the full dose. I just want to make sure I’m asking my clinic all the right questions and understanding as much as I can, especially when reproductive immunology is such an under researched field. And a gentle congrats on your positive test - fingers crossed it’s a sticky one

@Thornters thanks for the insight around DNA fragmentation. We are still awaiting his results - i will defo imagine they are gonna do the same - and advise him to cut down on the drinking. Been thinking of you and fingers crossed for your positive this month. ❤Last time I didn't get a positive until day 14DPO and even had implantation bleeding thinking it was my period.

welcome @v60 I also only just joined the thread recently. I am sorry to hear about your journey, seeing heartbeats and then miscarrying is just so evil. Sounds like you're in good hands and being prescribed all the right things. I too am on the complex protocol with Dr S, but haven't been prescribed the predisinole yet - my next focus i think. The Intralipids are £380 a pop here and take about 1 hour - my recommendation is always go super hydrated - that way its easier for it to go in. Its 100 ml and it says a 20% Intralipid. I know you can get ones that take longer. They recommend you have one pre Ovulation, and then after a positive test, at 4, 8, 12, 16 and 20 weeks.

@Jecca88 Thanks so much. Still testing negative and I'm 11DPO today. Felt twinges of period pain starting earlier as well so think I'm probably out this cycle but will continue to test for now. Will then start the whole rigmarole again with intralipids next week and then trying to conceive again the week after. This is the first cycle in a very long time that we haven't conceived. Not sure if I feel disappointed or relieved that I at least know I won't have to experience another miscarriage this month (maybe a mixture of both). Best of luck for the DNA frag results.

@v60 welcome to the group! So sorry you find yourself here but it's a really lovely, supportive group. I'm on the same complex protocol as @Jecca88 but with Prednisolone as well. I've never had any adverse reactions to the intralipids. They are expensive and it's a long way for me to travel for just an hour. I'm not sure if intralipids make any difference but I'll give most things a go at this point.

@Thornters - sorry to hear that :( - don't lose hope just yet though as the implantation bleeding - proper felt like period pains and I even had a few drinks on the day thinking ahh may aswell its my period.

I know it is exhausting and very expensive and time consuming.

I also am not sure if the intralipids make a difference but you want to try everything. I have had two miscarriages after being on the protocol and both times i had intralipids, pre-ovulation and 4 weeks one - so I am now thinking maybe i will just have them with a positive test.

@Jecca88 funny you say that - I just put a bottle of wine in the fridge to cool but I think I'll hold off for another couple of days just to be on the safe side. If implantation hasn't already happened by today then I'm probably hoping that my period does just start as later implantation has always led to a negative outcome for me. I'm off work for another 3 weeks so hoping that I can get pregnant next cycle as it feels much easier when I'm not stressed.

It's rough going through all the time and tests and costs and it still not working yet. I'm right here with you! Let me know what you decide with the intralipids. I'm going to continue with the pre-ovulation one too but mainly because we're only trying for a few more cycles.

Ladies, still no period (12DPO today) but still testing negative so feeling very much in limbo at the moment!

@Thornters such torture! are you still taking progesterone? i hate the limbo :(

@Jecca88 no, I stopped on Sunday. I totally forgot that progesterone can delay your period, making your cycle longer so pretty sure it’s that. I read it’s supposed to kick in 2 - 5 days after you stop taking so hopefully not long now. I spend most of the time hoping my period doesn’t start and now this week hoping it does!