Immune/NK issues - aka Pred Thread no. 23!

[Chickjen]

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

@Ultra26 Whether an IVF clinic will transfer multiples depends on many factors, including age. Some clinics also don't believe in NK cells or immune treatment, so you'd have to be selective in which clinic you chose.

It wasn't until my fourth transfer (two BFPs that ended in miscarriage and one BFN) that I was asked whether I wanted to transfer two: when I first went to the clinic the dr had been clear that they prefer to transfer one as the evidence just isn't there that two is more successful. The older you are the more likely they are to consider it though.

Hello all!

Did any of you start having morning sickness at 10.5 weeks? I was sick and nauseous last night (and I continue now) but I also have chills here and there. I am not sure whether to rejoice or worry. 😬 I hope it is a good sign. 🙏🏻

@ginandtonicformeplease Thanks for the info. I'll keep this in mind. We arnt quite there yet but just trying to think through scenarios. Luckily my clinic is willing to go along with the steroid and immune treatment and offer intralipids which is good. Can I ask if you had genetic testing done?

@Ultra26 No, we didn't: when we first went for IVF the doctor said that as we were both relatively young (in IVF terms!) and healthy then it would be a waste of money. After two miscarriages and a BFN he said it was something we could consider for the frosties, but that it can cause them stress and we may lose some during the thawing and refreezing process - then of course they have to be thawed again before transfer.

We did have genetic testing done on ourselves just to check there are no obvious chromosomal abnormalities. Tbh, having read up (a lot) on PGS testing then I'm not in favour of it, simply because there is no set standard in the UK: each clinic sets their own, so clinic A might transfer embryos that clinic B would throw away. If the HFEA had set some standards that all clinics had to abide by I might have felt differently. Plus it is very pricey and our entire IVF experience has been self-funded as our CCG doesn't fund it for anyone anymore.

@Ultra26 I didn't either but it should be noted if you didn't know that this baby has a different 'father' to the ones I lost...

Hi all, I've just been informed that I have a maternal medicine appointment for Feb. For any of you who are currently pregnant but much further along then me, did you have one of these and if so what was it for? I'm so confused and slightly worried. X

@KittyKatSmile @ginandtonicformeplease Thank you both for all this. I'll keep it in mind. I know the clinic we saw abroad suggested that this would be beneficial but guess we have more questions to ask especially since we are both youngish (32). DH has had all the dna frag stuff done too and that came back excellent so the question is over my eggs.

@MairMum18 I have no idea what that is; do you know who it's with? TBH I've found the NHS have been fairly woeful when it comes to keeping people advised of what they're supposed to be doing. I turned up to my gestational diabetes test having scoffed a huge breakfast (you're supposed to fast) because I hadn't been told that's what I was going in for!

@MrsMargot i'm still having morning sickness and I'm 11wks today. I also get the chills and am always cold. I think its a good sign so don't worry!

Has anyone bled from their injection site with clexane? I've been on it for five weeks now no issues but for the past three nights i've been bleeding when I remove the needle. I apply pressure for a few minutes until bleeding stops but i'm worried something is wrong. I've been very careful not to stick a vein. Is this a problem? Should I stop the injections....i've only got a few more injections until i'm done.

@zoe16 I used to bleed all the time on clexane. Nothing to worry about at all. Apart from the fact you'll then look like a pin cushion!!

thanks @KittyKatSmile such a relief to hear its normal. Starting to look like that and don't get me started on the soreness! Counting down to my last injection ;)

@zoe16 thank you very much! That is quite reassuring. I really thing it was either a tummy bug or a serious case of indigestion. It lasted a few hours and once I had 11 hours sleep I am back to normal. I hope baby is fine 🙏🏻

It is interesting that you have morning sickness. I thought that prednisolone masks the sickness. I only have the occasional nausea here and there and the tiredness. I hope it passes for you very soon! 😘😘😘😘

@MrsMargot I thought so too but hasn't been the case for me. I suppose if I wasn't on the pred it would have been much worse? Thankfully it is starting to ease and my appetite is returning.

Hello ladies,

I'm seeing Dr S today on day 8 - I know it's early but he wanted to see what my follicle growth was like. Just hope it's not a wasted journey again this month. He was conscious that if I see him Monday it may be too late for trigger shot.
I feel like rubbish as I've had the flu and will actually cry if it's negative news.
He did say that even though it's early he will have an idea of follicle growth at this stage.
Xx

@HoldingOn2Hope how did it go lovely? Hoping you got some positive news. This is a bitch of a journey alright....

Hi @KittyKatSmile a little better than last month. I think I made it clear to the nurse when she called a couple of days ago that Dr Jan annoyed me...whoops! But I blamed it on the extra hormones lol!
Left ovary still a bit 'quiet' and 1 dominant follicle on right ovary, others were abit small. But it is just day 8. Endo lining was thicker than what it was on day 10 last month so that's a positive and he's up'd my dose of progynova.
He's given me the ovitrelle injection to inject myself on Monday All the info in today's appt actually made me cry but I wasn't feeling well so just a bit overwhelmed.
He's recommended that if I don't fall pregnant this month then next cycle I'll be on letrezole and Gonal-f injections too.
He got rather annoyed with me that my husband hadn't attended today and that I had cancelled my husbands appt with male fertility consultant next week so I snapped back. I told him my husband needs to work so that we can fund this treatment. We are lucky to be able to do this however that doesn't mean he can afford to take time off to accompany me for a 2 min scan appt. I know he's a great Dr but having a go isn't going to make things any better. I just said to him that all these tests and negative results are really affecting my mental state! So one thing at a time pls! I know it's important my husband has these checks and if that was the only reason that could be causing the mc's I'd have them done straight away but my previous test results showed elevated Nk cells, endo lining too thin and last month letrezole wasn't working for me.
He was ok in the end and just said he wants me to get pregnant without ivf if possible.
I feel so rubbish today, flu isn't helping. So I had a cry on the way home and had a takeaway when I got in after my 4 hour drive.
Sorry to waffle on x

@HoldingOn2Hope not waffling on at all and sounds like you def deserved that takeaway, especially after that mammoth drive when not feeling well.

I always found him most unsympathetic so I'm glad you snapped back at him. I think he gets sort of immune to what we're all going through because he sees so many of us every day and we are probably all just graphs and statistics to him.

Hang on in there. You're doing brilliantly (and great that you'll have a change of protocol next month if this month isn't you time). Fingers crossed for you x

Hi ladies, I'm new to this thread but not to ttc! I've had 5 losses in the last 15 months. 3 chemicals and 2 mmcs at 8 weeks. I'm turning 40 soon and I've been on this journey for 8 years...

I haven't had immune testing yet but everything is pointing to it..
With my most recent chemical I did intralipids (at my request) but it made no difference and consultant put me on 2mg prednisone too.

I'm based in Ireland and I was wondering was it just blood tests that Dr S did to diagnose immune issues? My Dr here wants to do uterine biopsy. Hr used to offer a blood test called the 'Chicago bloods' but now he prefers biopsy to diagnose. Also as I just had intralipids last week for most recent chemical I can't have any immune tests now for 8 weeks.
Dr has agreed to give me prednisone for my next cycle but only 5mg !! Most people here seem to be on 20mg? Just wondering if anyone had success with only 5mg ??? I'm also on baby aispirin and progesterone.

Thanks and best of luck to you all.

Hello all,

Can I please bother you for some reassurance? I am going through the backlog of the threads to see what is happening with the pregnancy symptoms and how pred is masking (or can mask) things. I am feeling well today and I am going paranoid that there is something wrong with the baby. 😬 I remember @KittyKatSmile and @Chickjen saying that they were feeling well. Is it correct ladies? I am 10w5d today.

@Laineym welcome! I had a whole suite of tests (including immune testing) before Dr S and everything was coming back ‘normal’. In my last pregnancy (resulted in loss at 8 weeks) I was on 10mg pred and progesterone. When I went to Dr S he said that my immune testing was incomplete. I repeat his set of tests and he found that even thought my numbers are within range, the system is highly active. I am on 25mg pred (plus progesterone and aspirin) and of course intralipids. For me he is totally worth the visits but I am much closer than you. Can you find someone that follows his protocol there? That would be the safest option. Good luck!!

Hi @MrsMargot yes I can say 100% I was feeling better exactly at that stage. I started with no symptoms, or just vague ones that came and went, but I did start feeling a bit nauseous around week 8-10. But I distinctly remember going for my 10 week scan when I was around 10+3 and saying even that had now gone, it happened to be a lady covering for Mr S that day and she was really good and went through the scan really thoroughly to try and reassure me. She said it's just the body is starting to get used to all the extra hormones. I'm sure all is good in there ❤️

@Chickjen I really cannot thank you enough 🙏🏻🙏🏻
I am really hoping this is it for me too! ❤️❤️❤️❤️

Hi everyone, a very belated happy new year! Saw last night on the news that diabetes drug Januvia has been found to increase chances of successful pregnancies by two thirds in recurrent miscarriers. It apparently prepares the uterus lining and increases the number of stem cells which keep the embryo in. All my losses have been chemical or early. Most I ever got to was 6+4. It's like they just won't stick so am thinking this could be my problem (as well as active killer cells and husbands DNA frag!) Has anyone tried it? I'm currently with Dr S but loathe to pay £250 just to ask him about it. Thank you and hope you are all doing well xx

@MrsMargot yes, same for me. Only symptom was tiredness and a moon face

Hopefully you start feeling better after your 12 week scan. I certainly did. So close now!!

(And be reassured you'll get some symptoms! I threw up on the side of the road one day when I saw a dog pooh....!)

@KittyKatSmile thank you so much!! Oh I certainly have the moon face! I look lovely and round (literally). 🤓 I also have tiredness, tender boobs and some occasional motion sickness type thing. I just felt so well today I started worrying. I have a scan next week and I am always worried before.

By the way, you dog poo situation made me laugh! Gosh! Fun things are coming! 😂😂😂

Hi @FrannyAnny82 - I wasn’t aware of the article but I’ve just looked it up & it’s very interesting. I see it’s professor Quenby who has done the research. Maybe you could email the nurses and they’d speak to Dr S before responding? I’m sure Dr S would be aware of the article and have an opinion on it too.

Sorry I’ve been quiet - not much to report really! AF showed her ugly head again on Thursday and I was devastated that it was another month we didn’t fall pregnant despite following the treatment plan to the letter & timing BD perfectly over the Christmas break 💔 I can’t believe we’ve now been TTC for over 2.5 years and are no further forward. Reality hits when my friends, who were trying at the same time, are now planning their children’s 2nd birthday parties! After lots of tears, talks of trying IVF & considering adoption I managed to get through the day. I have my follow up appointment booked in March when I’ll have been on the hydroxy 8 months (trying for 6) - does anyone know what Dr S may suggest as the next steps? When does he recommend the super O?

Lovely to see the BFPs and everyone’s updates on how far along they are now 💛 xxxxx