Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

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

Welcome to the group no-one wants to be in

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

Thank you @Rebecca9876 @Jellystar23 @liveinhope100 I'd feel more comfortable going until 16 weeks on it so will talk to the consultant about it

@Daffodil21 I think going to 12 weeks is the key (when Dr S starts weaning off) - that’s end of first trimester/when placenta is fully formed and has taken over. I’m not sure if you have experience of it but it’s a really horrible drug with nasty side effects and to be honest I’m very relieved to not be on it anymore (even though I am so grateful as I know it gave me the baby I’m now carrying).

I feel much healthier and less crazy being off it now and being able to sleep properly etc but it’s going to take a while to lose my awful moonface/the double chin I never had before... Also it’s been a highly stressful/ lonely time as being on pred means shielding and being constantly terrified of catching Covid. A few women on here have decided not to be on it during Covid and I totally get that. I guess what I’m saying is it has a lot of downsides so don’t necessarily wish to be on it for longer if you don’t really need it for that duration - everyone’s prognosis/best treatment is different x

@Rebecca9876 I've been on 20mg for 4 weeks and then 10mg for 2 weeks before that. I'm finding I'm eating a lot more and I'm definitely more hungry and puffy, but other than that I'm not finding it too bad (puffiness could also be due to cyclogest??) Maybe I just haven't been taking it for long enough yet?? Hoping I'm just lucky.... I'd definitely feel happier staying on 20mg until 12 weeks then start weaning off rather than weaning off at 10 weeks, which is only 2 weeks away...(if we get that far of course, not happened yet)

I'm in an area where cases are extremely low, so tbh I haven't been completely shielding. Not been going out much but have a bit still...

@Rebecca9876 meant to add - sorry you found it so horrible and glad you're off it now!

@Daffodil21 ah you’re lucky you’re in such an area! I’d forgotten the ravenous hunger - I found that subsided after a while but the puffiness and then moonface got really bad for me by the end. I know it sounds shallow but I really hate my face now (I feel I can lose the general weight gain post pregnancy but am worried my face will never go back to normal!). Hopefully it won’t happen to you (and I was on 25 so a slightly higher dose). I wish you the best of luck with it all and hope 2021 will be your year :) x

Thanks so much for your replies @Marabouchoc, @LaurenAB94 and @Naticle! I think I will start conversations going with the NHS and see where it gets to.

@Naticle, that does reassure me to hear that you sadly had a loss on Mr S plan but went on to have your daughter afterwards. If you don’t mind me asking, did he change your treatment plan after your miscarriage?

@Rebecca9876 thank you! And thank you so much for your help. I'm so sorry to read what a rough ride it's been for you.
I'm all the way up in north Scotland so it's not as bad here. Obviously that can change at any point but for now it's manageable. It must be horrible to live in areas with lots of cases

@rainwillmaketheflowersgrow I had all the tests with Axa then a year later discovered Dr S. Axa did not pay for treatment with him. He accepted some of their tests but also made me repeat many due to length of time that had lapsed.

@EKR2020 I was treated in 2017/2018 and at that time treatment was prednisone. After the miscarriage he added hydroxy.

@Rebecca9876 I had the worst ever moon face but to be honest it had gone before I had my LO. I had cheekbones in photos just before I had her! And the upside of pred is that losing weight is loads easier afterwards. Bastard wonder drug!

Thanks @KittyKatSmile that’s good to hear, hopefully I’ll be the same! :)

Happy New Year everyone! I havent been on for a few months as was giving myself a break after my most recent (and 6th!) loss, my first on Dr S's plan. I've had a follow up appointment with Dr S since and he is now going to put me on hydroxy and 25mg pred for my next embryo transfer. Is anyone else on the double whammy of meds? I'm praying this works, I feel like we are running out of options at this rate and its making me nervous!! Hope you are all keeping well, I've lost track of where everyone is at but wishing everyone lots of luck this year xx

Hi @Luckyducky2 - yes I was on hydroxy and 25mg pred (and intralipids) and am now 16 wks so hopefully that can give you some faith in it :) Good luck! x

Hi @Rebecca9876 oh that is reassuring to hear, thankyou and so glad your little one is doing well! I remember chatting to you before, how are you keeping? Are you starting to relax a little now you are further along? Those first 12 weeks are brutal!

@EKR2020 I dont know what area you are in but it seems to be different everywhere....I don't have much faith in the NHS for recurrent pregnancy loss, after 3 losses they tested me for sticky blood which showed nothing and after 4 losses I was referred to a recurrent miscarriage specialist who basically shrugged her shoulders at me and told me I should consider egg donation as I probably had bad eggs! I dont think I have anything wrong with my eggs as I have a healthy 3 year old and something seems to have happened after I had him, Dr S has been the only person who has taken me seriously with my concerns. After my most recent miscarriage he has changed my plan and added in pred to the hydroxy as he thinks I need more. Hope that helps!

Thanks @Luckyducky2 sort of... but I’m still really anxious. I think that after multiple losses it’s really hard to trust that things will be ok, even after making it this far along, does that make sense? It’s also hard losing the support of regularly seeing Mr Shehata/the wonderful clinic nurses as my local hospital/midwives just don’t seem to care about or understand my anxiety after recurrent miscarriages and I feel quite “lost” in the system. I think we will end up paying for extra scans at the clinic just for support and peace of mind - we’ve spent this much so what’s a little more..?! x

@Rebecca9876 it completely makes sense and you should do whatever helps you to relax, if that means a few more scans then go for it! I found it quite reassuring once I could feel the baby moving, maybe around 20 weeks so hopefully that will help a little? Honestly you probably won't stop worrying till they're out safely and then it's a whole new set of worries lol! It'll all be worth it though, I'm sitting beside my 3 year old at the moment as he has his lunch and looking at his wee face just reminds me why I'm putting myself through all this treatment xxx

@Luckyducky2 awwww totally! I have a 2 year old and he’s been my rock through all this (and a key reason why we’ve tried and tried as we really want him to have a sibling). But I am just finding I can’t relax and enjoy this pregnancy in the way I did with him; instead pregnancy is now stressful and worrying. You’re right, once I can feel the baby I think it will help :)

Anyway, I’m really hoping the new protocol works for you. I didn’t mention before but I started on just hydroxy (and intralipids) originally but blood tests showed I didn’t respond well (nk levels actually went up not down). When pred was added in I fell pregnant that month and am now where I am now. So I have a lot of hope for you that the double whammy will be the answer for you too this year!! xx

@Rebecca9876 oh that is lovely you have a 2 year old aswell, they just keep you going dont they but I have felt such a failure not being able to give him a brother or sister as he asks me when he can have one and it breaks my heart! Crossing everything this is the year and this treatment works as I dont know what else Dr S can offer?! Not looking forward to the 16 hr round trip for intralipids!!!! But honestly at this stage if they asked me to dance naked down the street I'd probably give it a try haha! Xxx

@Rebecca9876 I'm just thinking that is so funny we both have wee boys and have gone through the same thing....I read an interesting paper in New Scientist about how some women after they have a son have a much higher risk of miscarriage than if they had a daughter! And it was backing up the immune theory, these boys are trouble lol! Xx

@Luckyducky2 dance naked down the street 🤣🤣 But yes totally! ;)

Yes! I’ve read a few theories that the female body can react to the Y chromosome from a first pregnancy with a boy. The thinking is it triggers the system against future pregnancies (both boys and girls) thereafter and possibly explains why so many who women have a firstborn son compared with daughter then go on to have multiple miscarriages.

It’s obviously not quite the same as the NK cell theory we are currently subscribing to (and both theories are disputed and not universally accepted etc) but I wouldn’t be surprised if the two are connected or both operating at the same time somehow in women like us. Lucky us ;) x

@Luckyducky2 I can’t remember the detail now but I read something that said it’s like transplants from males to females that fail because the Y chromosome is rejected by the body in some women with aggressive immune systems. Something like that anyway - but it made sense to me at the time! X

@Rebecca9876 so interesting and I absolutely agree there must be a link in there somewhere with the immune system? I'm one of these sad people, I need to read and read to try understand the science behind something. I kept saying to myself this isn't bad luck there's a reason this is happening? Anyway you have given me a huge amount of hope for this next transfer as our stories are so similar!! Hope your anxiety eases when you start feeling those wee kicks! Xxx

@Luckyducky2 and @Rebecca9876 - that’s so interesting because I have a boy too, who was born before my losses, and I always wonder if my pregnancy with him triggered something.

Hi @Tinpo gosh so many of us with the same story....can I ask what stage of treatment are you at? Are you with Dr S? It'll be interesting to see if we all need the same thing to successfully carry a little one again? Xx

@Luckyducky2 I had my first appointment with Dr S in December and have my results next week. But for now he has me on aspirin and hydroxy. He suspects CHI but it could also be immune - my losses were MMCs - two at 20 weeks and one at 12. What’s your treatment plan like?

Hi @Tinpo that must have been so traumatic to have been so far along in your pregnancies, I'm so sorry for your losses. My losses have been a lot earlier - 2 MMCs at 11 weeks, 3 biochemicals and an ectopic thrown in for good measure but thankfully that miscarried naturally at 8 weeks (the only time I have been grateful for it to happen as I didnt want to lose a tube!). I got my results last year right before the pandemic started and Dr S put me on hydroxy and I was already on letrozole for ovulation (i didn't want to travel up and down for his superovulation plan and was already under my local NHS fertility clinic which he was fine with) but after 6months nothing was happening and I did a round of IVF where I had my most recent biochemical. I had such strong pregnancy symptoms and an early positive test after my transfer but started bleeding heavily. Dr S thinks I need the pred aswell so giving that a go in a couple of weeks!

Sorry for my ignorance but what is CHI? Xx