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Conception

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

996 replies

Chickjen · 11/09/2019 22:33

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

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Eeviee · 03/10/2019 07:13

Thanks @DaniMERL. I appreciate your thoughts and I don’t know what I’m thinking, I’m not the Dr here. Just panicking about potential issues whitch haven’t even happened yet. I seem to worry about something different every minute of the day 😔

@WeeGi no problem 😊 Hope the doxycycline helps. X

kdd1980 · 03/10/2019 07:19

Hi all,

Hope you are all doing well.

@Chickjen that's great news. Hope you are feeling ok today

I've had another negative test this morning, that was cycle 3 of 5 on the plan and after 4 years of ttc and 6 mc's I'm getting really disheartened. I think I thought that this would be the magic treatment that would work this time but now it's not feeling too likely. I turn 39 tomorrow and I'm wondering if I shouldn't just give up on this dream now and get on with my life! It really feels like it's been on hold all this time.

Sorry, just needed to have a vent

DaniMERL · 03/10/2019 08:14

@Eeviee no worries. I understand.
And to @kdd1980 too, try to stay patient and have some faith. I used to conceive within 3 months and it was month 5 or 6 with the programme and then it failed which was heartbreaking. I just thought I was the one it wasn’t going to work for and nearly gave up. You do still need the right egg, conditions etc. There’s a lot to it.
Although the steroids didn’t mess up my cycle noticeable, something must have changed for it to slow things down a little I guess. But I then conceived in Dec and March (after loss in Jan and taking Feb off). That was an early chemical and then this baby was conceived at the end of March! We started seeing Mr S last July so I still reckon success in under a year is pretty damn good.
A good friend and fellow patient had her rainbow baby yesterday, thanks to her treatment. Another is due in Jan and another in April. All of these women have had multiple losses and no living children.
Keep the faith xx

Eeviee · 03/10/2019 08:51

Thanks @DaniMERL. Its wonderful to hear positive stories too.

@kdd1980 I'm with you, I'm not far of 39 too but I have to still have faith that it will happen. xx

DaniMERL · 03/10/2019 09:20

I’m 39 in March too 😞

Hey there’s a lady on a Facebook group who had her first Shehata rainbow at 45 and is pregnant again now!

Chickjen · 03/10/2019 10:53

@Eeviee how are you planning to track O? I did by temp and started pred the day of the temp rise which would be the day after O (agreed with MrS) and it didn't affect my speed of conceiving. I was happier that way knowing the egg was safely out before starting the pred just in case it delayed things.

@kdd1980 sorry you got a negative and just before your birthday too 😥 I know every negative is hard and adds to the fear and frustration, but you have to keep on, there is no reason this will not work for you eventually 💐 Can you do something nice this weekend you wouldn't normally do? Get drunk, eat unhealthily, go on a shopping spree? Whatever will let you switch off from this for a few hours and come back with a renewed fighting spirit next week ❤️
And Happy Birthday 🎉🎁🍰

I am 38 too - is there some sort of connection here between NK and age?!!

Thanks everyone for your support, I would be even more of an emotional wreck without you xx

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zoe16 · 03/10/2019 11:47

@Eeviee when I got my bfp from my most recent mc I read up about the steriods and asked my doctor about it. He discouraged me and said it has too many side effects etc and right there I decided it wasn’t for me. However, after a few weeks I found this thread and immediately regretted my decision. Once my pregnancy was determined non viable my doctor agreed to do steroid next time. However there isn’t a day that goes by that I don’t ask myself if that pregnancy could have been saved if I had taken the pred when I got that bfp. Who knows but I have sleepless nights over it. So I encourage you to follow Dr S protocol to the T if you can! My doc is following his protocol now but if no success by January I’m def going to Dr S!

Hang in there @kdd1980 it doesn’t feel like it but you’ve got the strength to keep trying. Just cry it out and find it from within!

@Chickjen Not sure if age is a factor, I had my first mc when I was 27 and I know of other ladies in their twenties going through the same thing.

EmsIMO · 03/10/2019 12:20

Morning Ladies

@kdd1980 I know how you feel, we're on cycle 3 of Letrozole ( but have been on pred since feb/march) and I have yet to have a positive ping. I literally can't get pregnant (we have a 5 year old) We've been trying for four years now. Also feeling very disheartened as we both turn 41 this December. Just keep going X

For those whose husbands have had the comet test, mine saw Mr Gordon last week and found him really helpful/straight talking etc.

Think we'll do a max of 6 rounds of Letrozole then take a break, then essentially we're being told IVF :(

KittyKatSmile · 03/10/2019 16:34

I'm about to turn 40!

@zoe16 just to put your mind at rest, Dr S would say that taking the pred from BFP wouldn't have made any difference. That's what I did when he told me I'd brought the mc on myself...! (Sorry @DaniMERL!!)
So that might help you somewhat.

@EmsIMO IVF isn't so bad. I guess it's easy for me to say that but I liked sort of knowing that I was doing something (rather than shagging and waiting!) I don't know; it's so different for everyone. Hang on in there.

WeeGi · 03/10/2019 18:03

@EmsIMO I second KittyKatSmile. I had IVF last Nov and it really wasn't as bad as I thought it would be. No real side effects. And I did feel like I was being proactive, trying something different and leaving no stone unturned. X

WeeGi · 03/10/2019 18:08

@kdd1980 @EmsIMO I feel the same. After my fifth loss a few weeks ago its the first time I've considered giving up. I want my life back too. It's an awful thought to keep plodding on after four years of trying, but heartbreaking to think of stopping. I'm 40 in a few months and I know this is my last gasp attempt. Dont have much more in me. Feel sad when I think about it all. X

EmsIMO · 04/10/2019 13:19

@WeeGi & @KittyKatSmile Thanks Ladies - The problem is I've done IVF so know what we're heading for! Did x3 - IUI (didn't work), ICSI (miscarriage at 10 weeks) & FET (chemical). Unfort now we know that we were almost doomed to fail, given the things that have flagged up for me and my husband under Mr S. Only cost us £XXXXXX to find out!!

@WeeGi - Oh it's so hard, it really is. I feel exactly the same at times. It's completely what you've said, wanting your life back X

zoe16 · 04/10/2019 15:43

thanks @KittyKatSmile it does help a little to know that but my gosh he was harsh. We have enough to worry about, we don't need to hear a doctor say we brought on the mc! He's lucky he has a high success rate!

Did anyone find sex uncomfortable after mc? After my third earlier this year I found sex quite uncomfortable for the first two weeks or so and I do not know what might have been the cause. Of course i'm worried it might have been endometriosis but then the discomfort went away and doc says I do not have any symptoms (although I've heard of women having endo and no symptoms). Is it possible I might have had some inflammation from the mc?

Re pomegranate juice for egg quality...can you eat the fruit instead?

Hope everyone is doing well and looking forward to a happy and relaxing weekend!

Wewin · 05/10/2019 12:13

@zoe16 I drink the pomegranate juice for womb lining. I didn’t know it helped with egg quality too, thanks for the information. I’ve been drinking it on and off for months so that makes me feel more hopeful. I’m sure the real fruit is even better for you.

I think I’m the oldest here at 43 and if I conceive I will deliver at just turned 44 and that is a bit scary for me. I don’t feel old, it is others opinions that I’m taking on so I have to try real hard to ignore that.

I’m 6dpo today and another week to wait. I ovulated early this cycle for the first time in 6 months. CD14 instead of CD19. I don’t know what did it as I’ve been hoping for that to happen. My temperature is high today at 37.69c and I haven’t taken any progesterone this cycle. I’ve decided to only take it at a BFP as the progesterone from ovulation doesn’t seem to be very successful for me.

Of course it doesn’t mean anything. I’m just stupidly symptom spotting as usual even though I promised myself I’m not going to as they mean nothing really.

Chickjen · 06/10/2019 08:24

@EmsIMO just an idea (unfortunately an expensive one 😕) have a google at Zhai clinic in Harley street. It is the Chinese medicine place that helped my friend. She went from IVF with only 3 unhealthy eggs collected (none fertilised) to conceiving naturally after 6 months here. I was thinking more for your husband as men are quicker to treat and they do treat both.
Admittedly it did not help me but then I didn't know about my immune issues at that time.

@zoe16 it happened to me too, I decided it was probably physchological (don't know how to spell it! 😂) I felt sex = miscarriage = heartache and my body was reluctant to go there again. But after the recent chat about the doxy I do wonder if it might have been something else.

@Wewin fingers crossed 🤞 it is impossible not to symptom spot!

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sistaaa · 06/10/2019 19:29

Hi everyone,

I'm really hoping someone here can help.

I've had 3 misscarriages and a ectopic pregnancy. Myself and my partner had all tests done and mine came back to say I have boarderline high NK activity. I have been put on DR S high treatment plan.

I'm suppose to be starting the steroids etc from ovulation. The problem is I'm using clear blue ovulation tests and annoyingly they just keep showing flashing smiley faces!!

This has been happening for around 5 days now. Should I keep going with the ovulation tests or start taking the medication. I am on day 15 of my cycle I believe ( my period started on the 22nd).

Can anyone help please?

Thank you x

kdd1980 · 06/10/2019 20:08

Hi @sistaaa keep going with the tests. That happens to be some months and I think I'll never get a soiled smiley then I usually get one around day 17. Beat of luck

kdd1980 · 06/10/2019 20:09

Hi @sistaaa keep going with the tests. That happens to be some months and I think I'll never get a solid smiley then I usually get one around day 17. Best of luck

sistaaa · 06/10/2019 20:22

@kdd1980 thank you so much!! It's so frustrating isn't it 😂 xx

KittyKatSmile · 06/10/2019 20:27

@sistaaa oh god, those bloody flashing smiley faces.... stick with it...

kdd1980 · 06/10/2019 20:28

I know! So annoying! I'm all over the place in the pred. The cycle before last I didn't get a solid smiley until day 17 then the one just past I got one on something like day 6??? Madness

zoe16 · 07/10/2019 19:55

@Wewin oh yes it is high in antioxidants. A friend of mine was told to consume pomegranate juice and walnuts to help with egg quality for her ivf.

@Chickjen i'm sure psychological played its role too, although I fear my DH has it more than me. He's very hesitant to try right now out of fear we'll have another mc but we're working on it.

For those who have received intralipid as part of their treatment for NKC, can you say what was your dosage (did you receive the entire bag/bottle of intralipid)?

Chickjen · 07/10/2019 21:50

Hi @zoe16 I've been given the full bag each time (don't know what the size/dose is though) a couple of times they have run saline through after to make sure you get everything even in the line, although the last time they just let it run right down.

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KittyKatSmile · 07/10/2019 22:50

@zoe16 yes I've had the full thing as well.

zoe16 · 08/10/2019 00:23

@Chickjen @KittyKatSmile that’s what I thought I would get too from watching videos of people getting intralipids, but my doc only gave me 1/4 of the bag. I asked why so little and he said that’s what he gives to all his patients. It made absolutely no sense to me and I keep wondering if he had given me more I wouldn’t have mc but I suppose w/o the pred I never had a chance.