Immune/NK cells pred thread #31

@Sophi81 @KtAgs ahhhh thank you both so much for these positive stories, they really help. Many congratulations @KtAgs ❤️❤️
Doctors can be so brutal and matter of fact, leaving no room for hope xx

@KtAgs same here I don't think I could have waited after 40 for 4 years either 😬
Many Congratulations to you xx

That's a definite head mess up @mintsugi . Really hoping for good news for you. At least you know what the likely cause is but that might provide little comfort.

It definitely sounds like you've got a plan @VenusStarr . Everything crossed for you.

In keeping with the pregnancies post 40, my pal had been trying to have her 2nd for 4 years and at 44 is pregnant and is due in Jan. She relies heavily on her faith to provide comfort as not sure I could try that long with no intervention.

We had our dating scan today. We're due end of March and we're having a girl.

Good luck to everyone embarking on new cycles - natural, superO and IVF. Xx

@Newbeginnings22023 I got pregnant at 41 with my second and had her at 42 so fingers crossed it all goes well for u 😃 x also my first child was born just a week before I turned 40 so essentially 2 kids in my 40's yet I had miscarriages in my 30's. So bizarre. The drs just kept saying it's because I'm old which used to really p me off 🙄 but I have 2 healthy kids now so good luck, I'm thinking of u x

Hi everyone, sorry I’ve been quiet. I was away for 3 weeks, which was nice because it forced me to stop thinking about anything stressful.

Starting my final IVF cycle later this month, all being well with my baseline scan. Already preparing for it not to work (being 41) and am feeling ok about it actually, knowing that I’ve done everything I could to give my daughter a sibling.

@mintsugi sorry you’re in limbo at the moment, it’s not easy going through this. I will say it’s not over yet and things can be absolutely fine. I had significant bleeding with my daughter but it turned out to be fine. Will be thinking of you xx

@VenusStarr Disneyland sounds lovely! Glad you’ve had some time away as well. I’m not doing PGTA personally because it’s not a guarantee of success so it just feels like a waste of money in my view. Hope all goes well for you in the next few weeks/months xx

Hope everyone else is ok xx

@VenusStarr thank you. That's worrying and makes me wonder if any of mine were false positive tests then! Mind you I've had high TNF Alfa and NK killer cells so something must be going on..thanks I'll check out the boot ones. I've seen some on Amazon called wonderffo that I might try too.

@mintsugi I am so sorry to hear about the stress and disappointment you must be going through, it’s so cruel to have your hopes lifted snd the quashed like that, but I still have everything crossed that this isn’t the end for you. Unfortunately nothing in my direct experience, but I came across of stories about people with subchronic haematoma who go on to be fine and it’s nothing to do with the baby. Including that of Emma’s first embryo transfer from the BFN podcast, who was losing lots of bright red blood due to SE, but then went on to have her baby so it doesn’t mean the end, but I hear your worry with you having been here before.
Really thinking of you ❤️
Would your EPU re-scan you? What’s CRP saying?

Thanks everyone who gave advice on cyclogest application, I decided to stick with CRP instructions as it can’t be that wrong if a specialist with so much experience prescribes it that way and agree it’s much easier and less messy.

Well, that didn't last long. I have started bleeding. I'm hoping against hope it will settle down soon but it feels all too familiar. To think how happy I was to have seen the heartbeat just this morning...

@star2022 in case you're considering DHEA still, I remembered this article that paints it in a pretty dodgy light: https://www.washingtonpost.com/business/2023/07/30/fertility-supplement-dhea-gleicher/

@mintsugi that's good you saw heartbeat. It is so hard to stay positive but you just have to try. Keeping fingers crossed.

I've done the 2 at bedtime after deciding to stick with what the crp said to do. Defo slot less messy than 1 AM and 1PM.

Does anyone know where to get first response tests from. I usually get them on Amazon but not coming up. Or can recommend any other sensitive tests to use. Thank you

Hi all,

I didn't have any further bleeding after the initial bit of spotting. Today was my first scan at the EPU. We saw a heartbeat and the measurements were in line for 6 weeks.

But (hate that there's always a but) there was also a subchorionic hematoma. I had a similar situation in my third pregnancy where a subsequent scan showed a missed miscarriage. So I'm still walking on eggshells and will lay low until my scan at CRP next Friday.

It's very up and down, but generally I'm feeling more hopeful this time than I have in the past. This was a cycle I was told to write off at CRP, never got an LH spike tracking at home, and even the early response pregnancy test was negative the first time. So maybe this is the baby that will defy the odds at all steps and be my miracle.

Does anyone have positive experiences with a hematoma in early pregnancy, and any advice on precautions to take? I have been told to continue as before by the EPU.

@clhiu I put both pessaries in at night. CRP says to do it this way whereas my EPU had said to do 1 morning and 1 at night. But I find it more convenient to do both at night and not have the lay in in the morning or leakage during the day.

@clhiu i asked on another thread and was told to put both in at night. Seems to work fine for me but would probably be good to double check with CRP anyway!

@clhiu yes I noticed that on my sheet and only just realised it was different to what NHS said. Am planning to email to check as due to start the cyclogest shortly.

I'm really sorry to hear about your latest outcome @nottsgdns X

@VenusStarr Disneyland sounds amazing! And you so deserved it. I hope your GP can do as many tests for you, mine can be really hit and miss, every little freebie helps massively.

Can I ask for those who CRP has put on 2 x 400mg Cyclogest daily whether they told you to put both in at night, rather than one in the morning and one in the evening, which I believe to be the more standard approach usually? Thanks

Apologies missed your post @nottsgdns argh I’m so sorry, that is a huge blow. I agree it’s still early and you could continue testing but appreciate late implantation is not ideal. How are you feeling? I hope you have some nice plans this weekend to distract yourself and bring happiness. Sending a big hug xx

@Privatemedical246 that’s an interesting point, I wonder if they do test if you are responsive to certain dosages? He didn’t discuss anything like that with me in my meeting but I’ll take a look at my results again to check. I’ve had the same thought about smep and whether it doesn’t give the sperm enough time to build up. I think the evidence suggests every day or every other day produces similar results but every day is a tiny bit more likely to be effective. But it maybe depends on your partner’s sperm, if they have a low count then every other day might be better? And if you both find every day too exhausting too! Agree not having definitive answers is very annoying!

@Lily1990 I'm starting straight on 25mg of pred as well. Did they do testing on your bloods and maybe it was responsive to 15mg of pred? So frustrating for you. Hopefully they can change your plan and I have my fingers crossed. Thanks about the dtd. I've often done smep but wondering if every other day is better as then sperm builds up. It's so hard not having definitive do this, take this and it will work. Everything is guessing game!

@Deerdancer34 I understand your feelings of feeling wobbly about the future and not reassured. I’m feeling the same at the moment too. The whole process is exhausting and relentless with disappointment and loss after loss. I think we can try as hard as we can with tests and treatments but also have to switch off from it all and have fun in the meantime too. And people do get there after many losses so it will hopefully be the same for us ❤️

@star2022 thank you for responding, I’m that’s so interesting we are a similar weight but he put you on 25mg pred and me on 15mg. Can’t believe he said 10mg won’t do anything but he put me on 15mg which is hardly any different! And I’ve now had a loss 🙄. Were your NK cells extremely high? Mine were high but not very high (think 217 off the top of my head, plus highly activated). It’s really helpful to know about your dose of hydroxy too. Gosh it sounds like such a horrid drug. I might push to go up to 25mg pred and if I have a loss on that then try hydroxy. Apologies if I missed this earlier in the thread but how come you aren’t going back to CRP? Will you see someone else or have a break?

@VenusStarr so glad you had an amazing and much needed break at Disneyland! What fun! I have never been but it sounds amazing. Exciting about your IVF but understandable it comes with apprehension too.

@Privatemedical246 I’ve also been told every other day but we do it every day for 3 days from a positive OPK (so that day, next day [ovulation day] and day after). Basically following SMEP to cover all bases. X

@VenusStarr so glad you had an amazing time. Disneyland really is a magical place and such fun!

Can I ask for advice as to how often people are having sex once getting positive ovulation. I think Dr S said just do every other day which we have been but I've had a positive opk this evening and now wondering whether to do it daily for a few days.

Thanks all

Ah guys i'm 7dt5dt and BFN on a FRER test. This is my fifth and final FET round (2nd on the Dr S plan - intralipids, pred, hydroxy). Slim chance I could keep testing and that result changes but it would, I guess, mean late implantation so lower chance of success.

I think that's it for me!

@mintsugi @KtAgs Thank you for the offer of dhea and sharing your experiences with me, I actually already have some sat in my cupboard but haven't opened them for this reason of not really knowing if its going to make me worse. Maybe its a sign i haven't opened them.. I did ask Dr Edge whether I should try them last month before my SO cycle, and she said it wouldn't do any harm (without even knowing my testosterone levels) so i ordered them but something was telling me not to take them and i'm glad i didn't.

@Ems123456789 thank you for letting me know too, I'm glad you had a good experience with them. Good luck today, i hope it goes well.

@Lily1990 I'm also around 51/52kg. I was initially put on hydroxy and had to have a loading dose of just 1 tablet (200mg) daily for 6 weeks before we could start trying. I was then told to continue on just the one tablet daily due to my weight so chances are you'll be on just one like I was, I think the standard dose is 2 tablets daily (400mg). However, even with just the one tablet I did experience really bad hair loss too, my hairdresser noticed it too. Since stopping though, my hair is slowly getting thicker, hasn't been the same but its getting there.

What I find weird is that I've always been on 25mg pred? So i'm not sure why you're on just 15mg. When i told Dr S about my previous ivf cycle failing on 10mg pred, he told me it would do nothing and that i'd need at least 25mg. So i don't know why they are saying different things?!

@Deerdancer34 I'm so sorry, its a lot of money and such an emotional toll anyway let alone after an ectopic. It's good you have a plan in place, I really hope SO works for you, would this be the first time on 10mg? The appointments really are so overwhelmingly quick, good luck for your scan tomorrow. I know the feeling of being uncertain about the future, I won't be going back to CRP anymore and it feels like i've had to grieve that chapter this past week and trying to come to terms with it.

Hope everyone else is getting on okay, and @VenusStarr hope you're having a lovely time away x

Hello everyone, well I went for my 1st appointment since my ectopic but I feel so unsettled with it all and slapped straight away with more bills. He told me to repeat the TNF and TB jabs which I wasn't expecting...I hope I won't need another humira injection, that cost me so much last December (I thought I had a year!) I find it hard to say no/question things and it goes so quickly in the appointment, I always feel overwhelmed & like I can't keep up...I didn't dare ask if I could do without ovulation intralipids... I think I don't feel very reassured that I have a chance to have my own baby, in fact it's less chance now since my ectopic but got to find the positivity I felt over my break this summer. Just feeling fearful at mo...
Anyway going to be back on Superovulation plan like before as ectopic just one of those things but going on 10mg this time...hope it works as it should & not 1 dominant follicle again. @Sophi81 I didn't ask about triggering without letrozole as I will need to try and encourage more follicles due to reduced chance since ectopic. Going for HyCoSy scan tomorrow to check tubes which I'm nervous about but suppose good to know what's going on. Sorry this post is a bit of nothing really, just feeling wobbly about the future. Wishing you all lots of love xx

@Lily1990 I'm on hydroxy and haven't had any hair loss I don't think. I didnt have a loading dose as Dr S advised I just take the normal dose whilst waiting to start TTC as I had to have the humira infections twice the hydroxy would then have built up in my system anyway.

@comingsoon786110 and @KtAgs thanks for sharing the info about Hydroxy, interesting you’ve had completely different experiences in terms of side effects. Agree @comingsoon786110 that some side effects are probably worth it if we can bring a baby home! I’ve heard ladies saying their hair grows back after stopping it too which is a relief.

I haven't had any side effects from pred or Humira thankfully, although as I mentioned have only been on 15mg of pred. And @mintsugi yes I’m at CRP, they said that 15mg would be suitable for my weight (51kg) but it seems way lower than the standard 25mg so maybe it’s worth trying 25mg before Hydroxy? Will keep you all updated after my appointment.

@KtAgs great to know the protocol worked for you previously for your DS! Hope this pregnancy is going well :)

Me and my DP are feeling pretty deflated after this recent loss, wondering if we will ever be parents. But hopefully we’ll feel better once I’ve spoken to Dr S and have a plan. Also speaking to an IVF clinic in early October about a potential round towards the end of the year to do PGT.

@Ems123456789 good luck for your appointment tomorrow, let us know how it goes xx

Morning all,

@Lily1990 I'm taking hydroxy and intralipids (at ovulation and from a positive test and every 4 weeks) and humira. I don't take pred. It didn't agree with me and I was put on a plan in early 2020 so height of the pandemic and Dr S did not mind me dropping pred at all. This is my second pregnancy on the plan. My DS is nearly 28 months.

I don't have bad side effects from hydroxy - I don't notice any. I have a high ANA though - I found it made some of my general immune symptoms better first time round (eczema and IBS). This time it made me feel a little grotty first couple of doses but nothing noticeable since the first week.