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

Hi @EmsIMO yes, I did that, pretty much for the reasons you've set out. I then got pregnant pretty quickly (maybe second cycle), lost the baby and Dr S told me it was my fault for taking the pred from that point only. I hated the side effects I was getting every month coming off it plus I'd been told by another professional that it could delay you getting pregnant. So hard to know what to do for the best. I don't know if I'd do anything differently if I had my time again; probably not because I just doubt I would have got pregnant again naturally. That 4th MC spurred me on to both go for IVF and never give another penny to Dr S :-)

Sending you strength

Thanks @KittyKatSmile and @Luckyducky2.

Losing a baby at 19w is awful and the 1st birthday the other week was especially hard but I also think that people's responses to it were so much more empathic than to my early ones that they are equally awful but in different ways.

When you have a late loss, they also give you the full works of testing (lupus anticoagulant, thyroid etc) and so I know the typical RMC testing wont find anything.

@KittyKatSmile that's so exciting how close you are. It'll be nice to hear of your LOs safe arrival 😊.

Sorry you're having such a rough time on the protocol @EmsIMO . I'm not a plan yet but it must be so hard to keep going when it does not seem to be helping you or producing the results you want.

Everyone on here seems so supportive and as @Luckyducky2 says, living in hope and reaching out seems like a good thing to do when we've all been through so much. Xx

@KittyKatSmile I thought you had done similar from memory - and god yes the insomnia has been driving me mad. I've sort of self-weaned myself off the Pred. I know this is against advice but I started his protocol in Feb 2019 and you do get to a point when you think ... what am I doing?! Thanks for replying and hope you're well X

Thanks @KtAgs - Exactly as you've said, all I've had in a year under Mr S 2 chemical pregnancies and you do just begin to wonder perhaps this isn't for me ... Good luck XX

@EmsIMO I got pregnant accidentally last summer (after having a son on the pred plan) and because it wasn’t planned I only started taking the pred from bfp, which was maybe 3 days after my period was due. I had another miscarriage and just like @KittyKatSmile Mr S said it was because I hadn’t been on the pred. I do know other people who have been fine taking it only from bfp but all my losses have been very early (5/6 weeks) so I think for me the NK cells are aggressive early on and I really do need it from ovulation. I feel terrible about that mc, still haven’t conceived again since and really regret being so stupid (I was tracking my cycles but randomly ovulated early, so a shag that should have been 7 days before o turned out to be 5 days before o and I conceived - it’s true that sperm can live a long time!). It’s your decision though obviously.

Hi @readmycards. I saw your message and didn't want to read and run.

I haven't started the plan so I can't offer you much I'm afraid. But I know that St Mary's embody a very different approach to Mr S. I suspect that in Professor Regan's book about Miscarriage, she is probably referring to people like Mr S when she describes clinics that take people's money without an evidence base! I would argue many of the succesful women on here are the evidence base but if Mr S doesn't publish his results, I can see why they may be sceptical.

I might be wrong but I would say they are at opposite ends of the spectrum in terms of treatment, and probably wouldn't recommend steroids. If you haven't seen them already, in the historical threads, there are lots of mentions of St Mary's as well.

I'm sorry you are yet to fall pregnant though. I know a few people on the thread have experienced that too. It must be very disheartening. I don't think I will have helped you much in your dilemma but perhaps someone else can be more helpful? Take care lovely. X

Hi ladies,
I hope it's okay to join the group. I've been following all of your stories since pred thread 23. I've had 3 miscarriages one at 6.5 weeks and two at 15.5 weeks. I have been a little afraid to post as I've felt that as sad as all of our losses are, nobody has had a late loss like me and that too twice. I've had the courage to post after reading @KtAgs story. I feel so sorry for all of our losses and it feels unfair but I am so happy when I see most of us getting answers and a way forward which gives me hope.
I am under the care of Dr S and I have been taking hydroxychloroquine 200mg & Aspirin 75mg and have been instructed to take prednisolone & progesterone from ovulation and then start clexane injections and ranitidine from a positive test. I have been too afraid to start trying because of previous trauma and the feeling that things will go wrong again. I think joining a support group full of you lovely ladies and expressing myself will help, and keep me going. Thank you to all of you for sharing your experiences and treatment plans. It's all so helpful and encouraging.

Hi @Gooe, I am so sorry to hear of your losses, how utterly heartbreaking that must have been. I feel the same as you, I've started the medication and suddenly I'm terrified of being pregnant again. My last miscarriage was also ectopic and the thought of losing a tube aswell as my little baby was just horrendous, I really thought I was going loopy at Christmas there and it does worry me how many more I can go through. Losing your babies at 15.5 weeks must have been unbearable, I've lost 2 at 11 weeks which was traumatic enough so I can only imagine the pain you must have gone through. I guess we are all in the same boat, putting our faith in Dr S and praying it works? Its scarey though !! Well done for reaching out, it's amazing how supportive all these lovely ladies in our phone are and I really cant wait to hear how everyone gets on xx

@Gooe welcome. I'm so pleased that @KtAgs' story has helped you to share your own experience. As I said to her, I can't imagine how heartbreaking late losses must have been. Please know how welcome you are here and that we'll all be here to help in any way we can.

Sending love

Welcome @KtAgs and @Gooe - sorry that you find yourselves needing this treatment but you are in the right place.

I got my 7th bfp today, 3rd cycle of SO. Hoping this will be my second child but obviously we all know there are many hurdles to get over first!

@KittyKatSmile If you don't mind me asking, when did you stop worrying it was all going to go wrong? I'm 18w2d now but just can't stop thinking it's too good to be true.

And congratulations @HarrietM87 ! That's fantastic

Hi @EmsIMO maybe you could try 20mg for a couple of months and see how it goes? That dose worked for @KittyKatSmile and @ginandtonicformeplease and it might be enough of a change to reduce the side effects?🍀

@ginandtonicformeplease so pleased you have got this far and would love to know if you have told your MIL yet! For me, it only eased at 28 weeks when he started moving more regularly. It's actually the reason I have been keeping away, I didn't want to sound so negative when I'm so very grateful to have got this far, but the fear has been crippling. I hope your baby isn't so lazy and moves better for you earlier! ❤️

@KittyKatSmile how are you feeling! It must be days now! Maybe the 29th as you predicted 😂

Congratulations @HarrietM87 I hope this is the one too 🍀

So many new faces and sad stories I have lost track 😥 You are definitely in the right place here, this thread was literally my only lifeline while we were going through losses/treatment. The support here is amazing as others here can understand so much better than anyone who hasn't experienced recurrent loss, as much as they might try. I hope it is the same for you ❤️

@HarrietM87 that’s fantastic news! Keeping everything crossed that this is the one.

We had good news at our scan at EPU on Thursday - measuring on dates at 6+1 and a heartbeat. The only other time I’ve had that is with my daughter so trying to stay really positive. Have a scan with Mr S on Thursday next week when I should 7+1. I think the anxiety only goes away for about 5 mins after a scan doesn’t it!

@KittyKatSmile can’t believe you are nearly there! Are you having a natural birth or a c-section? How are you feeling?

@ginandtonicformeplease with my daughter I have to say I felt pretty anxious all through my pregnancy as I didn’t believe it would happen but having strong movements definitely helped but then of course I worried when she didn’t move enough (and I had anterior placenta) so did frequent the assessment unit quite a lot!

Hi to everyone that’s joined. Sorry you’re here but everyone is really knowledgable & friendly xx

@ginandtonicformeplease for me it was after the 12 week scan and the harmony test and then once I could feel some movements (I'm quite tiny so it was pretty early on). I also obsessed over the miscarriage rate thing and once it got really low the statistics soothed me. That said I'm due next week and I've refused to have a baby shower or let people give me things because I won't be happy until my baby is safely here. Have you tried the app mindful ivf? I know it feels a bit late for that but he's very calming. Other than that I would say to just try and enjoy it, which is bloody unhelpful advice. Try and think how you'll feel once your baby is here if you didn't try to enjoy your pregnancy at all.

Congratulations @HarrietM87, brilliant news x

@EmsIMO I'm not with Dr S, but my IVF clinic seems to follow a similar protocol and 20mg is their standard, so @Chickjen is right, you could give that a try.

@Chickjen it doesn't seem five minutes since I was on here asking for an alibi as MIL was in danger of going under my patio! I'm actually on the train going up to see her to tell her now - I have no idea what she'll say. DH reckons a lot of screaming, then ignoring us while she posts on Facebook and makes some phone calls DH's cousin announced her pregnancy earlier this week, and rather than congratulate her MIL called DH and complained (again) that she isn't a grandma 🤦‍♀️

X-post @KittyKatSmile ! I didn't go for the harmony test, but the NHS ones came out very low risk. I'm also a statistics lover, but I don't think I'll get any comfort from them until the baby becomes viable. I can't help but think that the more people I tell the more likely it is that something will go wrong - I know there is absolutely zero logic behind it, but I haven't even told most of my friends yet.

Thanks all for the congrats. Obviously I did another FRER this morning and the line looks exactly the same, so panicking it’s a chemical! Rationally I know I should have left it 48 hrs at this early stage but it’s done now. So jealous of those people who have “innocent” pregnancies!

@Gooe I'm really pleased you found my msg helped you post. It's so scary posting anywhere (I'm on the Sands forum - took me months of lurking to post there!) Two late losses must've been awful. I'm so sorry.

@HarrietM87 - gentle congrats lovely although I appreciate it's hard to be excited. I often grieve for the loss of pregnancy innocence. It's so unfair!

Glad the EPU scan went well @mezgaski. The mantra on here is 'today I'm pregnant', right? But the scanxiety is REAL!

@ginandtonicformeplease I totally hear the worry about telling people sort-of tempting fate. No one really understands what pregnancy after loss feels like unless you've been through it so just do whatever helps you get through each day. If that means not telling anyone ever, then do that 😊. Xx

@ginandtonicformeplease I’m also still very anxious, don’t believe I’ll be able to relax until baby is here safely in my arms. My husband and I had a gender reveal last week and we only invited our parents as we’re both still so scared to let people know too much. Things have been complicated too by the fact that I was diagnosed with complete placenta previa at my 17wks ultrasound and advised of risk of bleeding/premature labor. I’m doing everything possible to prevent bleeding and keep baby in as long as possible. He’s moving few times a day and gives me reassurance that he’s ok so I’ve been trying to remain calm. We just have to take it one day at a time. Do you know sex of baby?

@ginandtonicformeplease I hope you got the reaction you deserve and she is over the moon for you xx

@zoe16 that sucks to have extra worry after all it's taken to get here. But as long as baby is fine, and it's been picked up early so you can be looked after ❤️ I have something similar ish, prof A at Mr S clinic thinks I have a septum or bicornarate uterus that is preventing baby from turning (he is breech) he also thinks I will only be able to carry till 36/37 weeks. I am more than happy with that I just want him here! But the NHS sonographer can't see anything unusual and they will only book a caesarean for week 39 if he still doesn't turn by 37 weeks. So the 'plan' is to wait to go into labour and an emergency caesarean!

Hi everyone, hope you're having nice weekends.

@HarrietM87 Congrats on the BFP! How are you getting on?

I got a squinter on Saturday and it's not much darker today so think I'm having another chemical. It'll be my second one in as many months which is just evil!

@FrannyAnny82 I really hope that’s not the case. I’ll be thinking of you over the next few days. Let us know how you’re getting on xx

Thinking of you too and hope you’re ok @HarrietM87 - so unfair that we’ve all been robbed of any sort of pregnancy joy! X

Thanks @Crystal2020 and @FrannyAnny82 and I’m so sorry you’re in a similar boat @FrannyAnny82.

I haven’t tested again today as out of tests. Will get one tomorrow and will have been 48 hrs since my last test so should give a more conclusive result.

Will post a pic of my Friday and Saturday tests later - they were both definite positives but zero progression between the two. I’m hoping is just a bit early. I had extremely low HCG with my son so maybe low doubling rates or something. But will have to see.

Thanks @Crystal2020 @HarrietM87 here are mine. I'm not sure of exact ovulation as clear blue tells me one thing and internet cheapies another! But I'm roughly 10dpo today. Top two are yesterday, bottom two today FMU and SMU.

I'll be thinking of you Harriet. I hope you get a lovely, thick line ❤️🤞xx

Hang on, better pic! Only slightly! You can tell I'm clutching at straws! I'll be inverting them in a minute 😂