Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

@comingsoon786110 thank you so much, this is incredibly helpful! Especially as I can’t see Dr S for another 10 days, it’s good to know what to expect. I’m really sorry that you have had losses on his plan, it’s heartbreaking. I can understand why you added medications after having a loss because psychologically it gives a bit of hope, rather than feeling like it’s doomed to fail again (even if chromosomal).

A couple of questions:

• Is hydroxy the next addition after having a miscarriage on pred typically? And do you need to be on hydroxy that for 6 weeks before TTC again? I think I read that somewhere.

• what was the test you had for the cells in your uterine lining? I took doxycycline nearly a year ago as my doctor at the time said she’d be happy to prescribe it ‘blind’ without knowing it I had an infection. I’d quite like to know if I have it before trying the antibiotics again.

Finally, something unique about this loss was that I only got a positive at 12DPO and it was very faint compared to past pregnancies (and developed later in terms of line progression), so thinking late implantation. I wondered if late implantation might be more likely reflecting a chromosomal problem than an issue with NK cells? No worries if you don’t have any idea about that, I will ask Dr S. it would make me feel better if there was a good reason to believe this was chromosomal and something the treatment couldn’t have prevented xx

@Lily1990 no the hydroxy was part of my plan from the start. I got my results last October and started on hydroxy for 6 weeks before i was allowed to start ttc as it has to be in your system for a certain amount of time. I have been on and off of it since then.

I basically had a hysterscopy on the NHS as they thought i had a heart shaped womb which wasn't the case. Part of that process they did the biopsy and checked for any infections etc and thats what resulted in the doxycycline.

I am not too sure about your last point/ sorry! I will leave that to Dr S to answer for you. If i was to advise you of anything, i would say move onto the next level of meditation and it should hopefully do the trick!

Hi @mintsugi , hope you're ok. Unfortunately, spotting for me has always equalled a loss but I know lots of people where this isn't the case and their babies are healthy and fine.

@star2022 I got some dhea after not getting pregnant for ages and it was not good for me at all. I ended up in A+E with really bad post period bleeding and didn't ovulate that cycle. Dr Edge was kind and did a scan for me. Although she didn't tell me off she said not to take it any more. Happy to send my dhea on to someone as well if indicated for them.

Had a good scan at 10w5 today. Have opted for the harmony test. Convinced everything will be bad news still.

Hope everyone is OK. X

@comingsoon786110 thanks, that’s really good to know! I’ll keep you updated after I’ve had my appointment with Dr S. have you found hydroxy ok in terms of side effects? Not super keen to take it after reading about people’s experiences with hair loss!

@KtAgs congrats on your scan, that’s amazing! What medications are you taking and is this your first pregnancy?

Does anyone know of anyone else being on just 15mg pred? I‘ve mainly heard of people being on 20-25mg and wondering if my dose is way too low x

Thanks @Lily1990 and @KtAgs .
I'm really not sure what to make of it. The spotting was shortlived and settled down quickly but I had cramps and lower back pain for another 24 hours. CRP said to stop taking aspirin and take it easy but no need for bed rest.
I had planned to just wait till the six week scan and not let the anxiety take over. But I succumbed and bought the Boots cheap testing strips. It was the exact same colour today as yesterday, not getting darker.
My symptoms are strong otherwise and I don't think I can last another week with the uncertainty so I'm getting bloods done tomorrow and again on Friday to check if HCG is doubling.
I was SO over the moon at being pregnant again after over a year. Didn’t take long to get a reality check of how many hurdles there are still to go. I guess with our histories, the trauma and fear is always lingering under the surface.

@KtAgs thats great news! And lots of luck for the test results. Fingers crossed for a success story!

@Lily1990 I'm on 25mg pred. Are you at CRP? I didn't think they put anyone on lower doses.

I’m a bit behind on the thread but @star2022 just answering your question on DHEA. I did this for my second egg collection and I believe either this or Chinese medicine helped me get much better results. On my first round I only got 2 eggs but on my second I got 6 eggs and 4 were from my left ovary which had been non existent on my first cycle. I found with the DHEA it’s better to increaSe it gradually and it can give you oily skin. I believe you aren’t meant to take it for longer than 3 months.

@HopefulH sorry you’ve had a negative. Totally know what you mean about the finances. We didn’t envisage that we would be 4 rounds down and still not has any luck. It’s so expensive! And everyone always says it will be worth it if it works, and I’m like oh yeah that had never crossed my mind 🙄 obviously!

I am feeling better physically thanks this week. Nice to actually have some energy back, feel like I’ve had none since I started ivf at start of June. Got an appointment with Dr Thum at the Lister on Thursday (he did my immunes for this cycle) so will be interesting to see his thoughts. Also got a recurrent miscarriage appointment for end of September. Gradually starting to see some friends again too, didn’t feel up to it last week and haven’t really felt like seeing my friends kids. Difficult to balance!

@Lily1990 not going to lie to you, the hair loss is real. Mine is bad and I have noticed a lot of thinning especially down my middle part. My hair constantly falls in bunches. It also gave me a baddd stomach when I first started taking it especially when I took the loading dose. The only thing that kept me going was that one day I would get to hold my baby in my arms so the hair loss was worth it.

Unfortunately as part of my plan I have to take hydroxy until I give birth so the full 40 weeks!! I do miss some days if I am honest and I am bot convinced what effect hydroxy does have but you can't pick and choose what meds you take with Dr S so I have to stick to it.

Let me know how your appt goes!! Wishing you all the best 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.

@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

@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.

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

@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

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!

Oh @nottsgdns ❤️ I'm sorry to hear this. Sending you lots of love.

I'm really behind on everyone's messages, need to catch up but just wanted to say hi.
The break was lovely @star2022 we went to Disneyland! 🤩 it was fab and definitely not something we could've done if I was pregnant. I was actually ok with all the families and kids too.
How's thing with you?

In the middle of ivf admin 🫠 😵 just coordinating bloods, surprisingly my GP has given me the form for AMH but has said they might not do it. Dh needs dna frag retest, luckily can do it as part of the crp retest and he needs a sperm analysis again, the consultant mentioned icsi this time. So think we're on track for November start, all being well. Still don't feel hopeful it'll work.

My period arrived 9 days late last month 🙃 definitely think anxiety and stress contributed to thar, hopefully just a fluke and not perimenopause!

Right, I'll try and catch up! 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

@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

@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!

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!

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

@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.

@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!

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.

@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

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/