Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

Hello ladies,

Hope you're all doing okay and coping well at this awfully unsettling time.

Those of you who are pregnant just keep going and follow his instructions, he knows what he's doing as that's why we are all under his care because we trust him.

AF arrived today and I woke up feeling like yep I'm going to give it another go with super ovulation as at least we are quarantining and I can actually rest if I was to get a bfp (I'm self employed so all my work has been cancelled for at least 3 months).
Anyway I spoke to nurse at the clinic and she really strongly advised me against it, said they will support if I did go ahead but the biggest concern was that day by day things are changing and if a complete lockdown was instructed by government we may not be able to travel for scans unless we are pregnant so follicle tracking scans etc would not be considered a priority.
It was not what I wanted to hear but I'm glad she was honest. So I'm taking a month out - hopefully in a few weeks we should know what's happening in the world.

She said the reduction in pred was something Dr S had thought about very carefully and he has to weigh out the pros and cons, she's also told me to stop aspirin as I won't be ttc for a month.

I kind of wish I'd had a bfp as it would have given me something to focus on. I've had a down day today as I know now for sure there won't be a baby for me in 2020. I hope tomorrow is a better day xx

Thanks @HarrietM87 and @Countrygirl220. My scan went well yesterday, measuring a day ahead at 10 weeks. I can't believe it, I was so nervous. They took bloods for the harmony test so I am now nervously awaiting those results. Mr S told me to start weaning the steroids straight away (5mg every 5 days) which was before the guidance that came out today. He said he had to balance the risk to me v miscarriage. It was eerie at the clinic and on the roads getting there. I'm just hoping they stay open.

It's really tricky though and I would be feeling exactly the same as everyone here if I was ttc - I'm not sure I could stop but I know my DH would tell me that we couldn't as he wouldn't want me to be at risk, but I'm sure I would have wanted to continue regardless.

Sorry @HoldingOn2Hope it was a bfn but glad the nurses were up front. It's all a bit rubbish isn't it.

@Eeviee @HarrietM87 how are you both doing - when are your scans?

Sending lots of love to everyone at a really tricky time - stay safe xx

For those of us still wanting to try through this all is there any merit in going on a low dose (say 5-10mg) from ovulation? In addition to the cyclogest and aspirin of course. Or just doing the cyclogest?

@HoldingOn2Hope I’m sorry that it wasn’t your month ☹️ I’m expecting AF any day now after a BFN at 11dpo and a big temperature drop today. I know how you feel about having something to focus on 💛 we were planning to ask Dr S to start super ovulation as it’s been 7 months on hydroxy & pred with no luck, but our telephone conversation on Wednesday last week largely focused on the virus outbreak and how he wanted us to stop trying. We told him we would stop the Pred but I am going to stay on the hydroxy as if we took a 3 month break then it’d be another two months to get it back into my system before we can try again and I just don’t want to accept a 5 month set back 💔 He did send us some info on the super ovulation plan through the post and said we could discuss it in May/June when he expects we can start trying again.

@mezgaski So pleased you’re scan went well ❤️ I hope you’re managing to relax and stay safe in these unsettling times xxxx

Not good news from today, the sac has grown from 7mm to 13mm but nothing in it yet and they’d expect to see a yolk sac by now. Have to wait for another scan next week to confirm but it’s unlikely it’s viable 😢

Oh @Eeviee I'm so sorry to hear that. Sending you big hugs in this absolute bitch of a journey xx

@Eeviee I am so so sorry to hear this, you must be going out of your mind I find it's the waiting between scans to be the worst, if they could just give the information then we could deal with it but waiting and waiting is pure torture. I am thinking of you xx

Oh shit @Eeviee I am so so sorry. Did you have the scan locally or did you have to travel to the clinic? It is just awful. I’m so sorry.

@mezgaski congratulations. So pleased you’re doing well. How do you feel about reducing the dose? I think if I was 10 weeks I’d feel fine about it...I’m only 7 weeks today and just don’t have faith that the lower dose will be enough to sustain this one. ☹️ @FrannyAnny82 what are you doing? When is your next appointment?

oh @Eeviee I echo the others, I'm so so sorry to hear this, it's just just horrendous and absolute torture just waiting to find out. I hope you are looking after yourself as best you can.

@HoldingOn2Hope am really sorry to hear about your bfn as well, that day is always such a downer, I hope you have woken up today feeling a bit better.

@Ultra26 that's exactly what we've been wondering, should we give it another go in a bit more of a relaxed fashion and just see what happens. My gynae said he'd seen many women who get to 5/6 and then go cold turkey without any drugs and it works. It's obvs not Dr S advice but maybe with the progesterone as a bit of extra support, you never know. I suppose the thing to weigh up is how we'd feel if we miscarried again, is it something we could emotionally deal with? I personally hate the thought of time ticking on and not doing anything.

@mezgaski congrats on your scan, awesome news! Gives us all hope!

@HarrietM87 I totally get how you feel, what do you think you'll do?

@Eeviee I'm so so sorry to read this. I wish there was something I could say to help but it's just totally shit and so so so unfair. Sending lots of hugs to you today. I'm sorry x

@HarrietM87 your mc's are really early aren't they? I think the fact you've been on the high dose now and had a good scan is a really positive thing. I completely agree that 10 weeks is different to 7 but based on your previous mc's you are doing so well now and it's heading in the right direction. What are you going to do? I do feel OK about weaning off as it's only 2 weeks earlier than his normal programme and I'm actually looking forward to getting off them! It feels positive moving towards that so I am going to maintain that. I just have to stay calm waiting for Harmony results. It's always something isn't it. I'm meant to be seeing the midwife tomorrow but have just asked if I can do it via telephone to avoid going to the drs. My next appt is 8 April for intralipids and the anomaly scan with the professor.

@Wishing5tar thank you. I think that sounds like a plan re the hydroxy as it would put you back and actually positive he's saying May/June which isn't too long away. IT's still really frustrating though.

@countrygirl thank you x

I'm so sorry to hear that @Eeviee. Must be so stressful to have to wait. I know this goes without saying but everyone's feelings still matter in the context of covid. And because other people may focus on that, i just wanted to state it clearly. So keep sharing here ❤

Glad some ladies have had positive scans but I appreciate the new titration advice must be stressful. I'm not sure how I'd feel about it.

On the one hand, not putting any unnecessary strain on the NHS is important. But on the flip side, for me, I've lost late and been trying since August 2018 to have a baby. So I hear Mr S' points but I think striking a balance between physical and mental health is important here and any decision I make has to be one i feel comfortable with. Plus, I had heard hydroxy is being used in clinical trials to treat COVID-19. Maybe he got some new data on this and he was the one who told me about it in our meeting.

Take care ladies xxx

@HarrietM87 I started the lower 20mg dose today and feel quite positive because at least it might give me a fighting chance against the virus. Obviously terrified of having another miscarriage and I'm only 6+6 today so will just have to hope and pray it's enough. I've heard that a lot of people taking pred for miscarriages elsewhere have been ordered to stop completely which concerns me. Just want to get as far as I can then get off the bloody stuff. My next scan is a week today, feel sick with anxiety already. Hope you're doing okay and are not too stressed. Have you got another scan next week? x

@FrannyAnny82 are you at the clinic next weds? Mine is on Thursday. Hope I make it that far. I’m worried even about getting there as am going to have to get a taxi (will set me back about £300!).

Thanks for the other messages - @mezgaski yes my losses have all been pre 6 weeks, but as I’m only 7 weeks today I feel like I’m still very much at risk. Would like to discuss it with Mr S in person ideally.

@KtAgs I agree with you. I’d almost certainly keep trying now because you don’t know how long it will take.

@Countrygirl220 I think that's what we are going to do and also properly self isolate. We haven't left the house in a week now so feel fairly safe. And if things go wrong I'll be mentally prepared for it. Let me know how you get on. Good luck to everyone during this tricky time.

@Countrygirl220 i think thats a great idea, we'll probably do the same as you and just relax and see what happens. With aspirin and progesterone, as you say it might just be enough to keep it going? I cant bear the thought of just giving up but I really dont think taking pred would be a good idea for me as I have to go shopping/pick up prescriptions for our elderly parents, so it would really be a huge risk.be interesting to see how everyone gets on with the stresses of daily life all taken away!! xx

Thanks for your messages, held it together yesterday but am struggling today. Although have to wait for a scan next week, the consultant who scanned me basically told me it was bad news,

I suspect with an empty sac its called a blighted ovum which is a new one for me. 😥

Hope you are all keeping safe and well x

@Eeviee I'm so sorry this is happening to you. Be kind to yourself lovely xx

@Eeviee I’m so sorry about this. Both of my 2 missed miscarriages have been like this. Blighted ovum isn’t used as a term anymore as it seems so pejorative - it’s a miscarriage like any other. I hope you can get some rest and are being looked after. Be kind to yourself.

@Eeviee thinking of you xx

Thanks for the support ladies. I know I’m in good company here, thanks for letting me share.

@HarrietM87 thanks, yes I see BO is an outdated term. Did you discuss at all with Dr S? If it’s chromosomal then nothing to be done, I’m just worried it’s to do with my immune problems but I’ve been on all the meds.
X

@Eeviee I had 3 miscarriages before my son, 2 natural and spontaneous - just started bleeding at 6 weeks. And then the 3rd was a missed mc similar to your experience - had a scan at 7 weeks, sac&yolk sac measuring 5.5 weeks, rescan 2 weeks later sacs had grown but no embryo. I then had the tests with Mr S and he put all my previous mcs down to the NK issue, I had the treatment, had my son and all good.

Fast forward to last summer and I freakishly ovulated 5 days early for the first time in my life (I have really obvious O pains so could feel it happen) which meant that as we’d had sex 5 days before that (10 days before expected ovulation!) I managed to conceive. Didn’t test until period was 3 days late, started the pred that day and then had a re-run of the last mc. Mr S said it was most likely because I’d started the pred late and there was no point in testing because if it was a chromosome issue then it was random and unlikely to occur again, and if it wasn’t a chromosome thing then it was because I’d started the pred late. I do think I need to be on the pred early because my losses have all been pre 6 weeks/pre heartbeat.

In your case though you’ve obviously been following the plan to the letter so it might be worth having tests done on the pregnancy so you can rule out a chromosome issue. If it’s not a chromosome thing then you may need to tweak the plan. Have you thought about how you’d like to manage it? Both times I’ve had an MVA which is like a D&C but with local anaesthetic (horrible but quick recovery). A D&C or MVA would make it easier to collect it for testing, but obviously you’d have to go to hospital which may be worth avoiding at the moment. DM me if you want to discuss more. Thinking of you xx

@HarrietM87 thanks. I've also had 2 natural miscarriages around 6 weeks, then the last was a missed miscarriage stopped growing at 6 and then saw Mr Shehata. Yes took pred and progesterone from ovulation (give or take a day or 2). I had a surgical management last time, it just took my period a long time to come back so I don't know, I don't fancy waiting around for another 3 weeks waiting for it to happen. I asked for my last one to be tested which was normal, I just don't know if they can test if there is no embryo, I only have a gestational sac. Will just have to wait.

@eeviee they can test if no embryo - the sac is enough. It’s worth preserving the opportunity if you can I think.