Please or to access all these features

Miscarriage/pregnancy loss

Find support and share your experiences on our Miscarriage forum. See also legal rights and support after baby loss.

Immune/NK Issues - aka Pred Thread no 26

998 replies

KtAgs · 11/10/2020 19:00

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.

OP posts:
Lalaifa · 02/11/2020 16:13

@KtAgs we may have crossed paths! I've just finished my intralipids too!

Hazlet2 · 02/11/2020 16:20

Hey ladies, hope you're all doing ok. Congrats to all with good news, so lovely to hear!

@Everhopeful35 fingers crossed for you re humira. I've just been to ARGC today to get a couple more blood tests done before having the humira prescribed. I asked the nurse - as we are trying naturally - whether we'll still be able to have the second round of humira if needed and she seemed positive that we would, despite covid. Not sure if that helps as I know you're with Dr S. She also said that the clinic will be operating as normal during lockdown xx

VenusStarr · 02/11/2020 16:26

Brilliant news @KtAgs! :)

Hope you got on OK today @Lalaifa

Congratulations @Eeviee, i hope the bleeding stops soon and you get some reassurance ❤️

@Everhopeful35 I have my first appointment on Wednesday! I've been so anxious that lockdown would scupper things but glad to see they are open as usual. What time are you there? My appointment is at 1.30.

Thanks for sharing about the super ovulation @Rebecca9876, pleased to hear all is well. Initially I thought I wouldn't do SO straight away, partly because of the travel but now I'm wondering if we should just try it. I still need my tests and he might not suggest it for us (although we have been ttc 3 years now, all my pregnancies have been in the last 18 months so we have struggled to concieve and my amh is now brilliant for my age). I'm not sure if my cycle is returning to normal yet, it's been a month since my medical management and I had a very light period that lasted only 1.5 days then loads of ewcm on cd3 but I'm cd5 today and had some brown spotting, that's not happened with previous losses.
I'm trying to prepare myself for things taking a while - I'm guessing he isn't prescribing predisolone due to covid, so it's likely we can't try until the new year regardless. Sorry, on a ramble there.

Best wishes for Thursday @LRL12 🤞

Hope everyone is OK xx

VenusStarr · 02/11/2020 16:27

amh is not* brilliant for my age! 🤦🏻‍♀️ Looked like I was bragging then...🙄

Whyisthistakingsolong · 02/11/2020 18:42

@Everhopeful35 I've been fine actually. The worst thing was the stinging injection. Good luck with your appointment x

Great news @KtAgs!

Interesting @rebecca9876 I am considering So, I have fallen preg fairly easily once on progesterone but have read it can make your eggs optimal quality Star

Lalaifa · 02/11/2020 20:21

@Rebecca9876 thanks for the info about Super ovulation. It's very useful. We're considering it if nothing has happened by the next med review. We have had trouble conceiving in the past too.
@VenusStarr everything went ok, thank you. I was just on ovulation intralipids. It's very expensive but I have very high NKs cells and activity.
Good luck to everyone that has appointments at the clinic soon @Everhopeful35, @Whyisthistakingsolong. I was put on hydroxy at the beginning of September and told to take a loading dose so that I could try straightaway. Basically I didnt have to wait 6/8 weeks to start trying. So maybe you can try sooner than January.
@Eeviee I hope the spotting subsides soon.

LookingforAnswers86 · 02/11/2020 20:52

@Lalaifa oh amazing! Hopefully that will be an option for us so, thanks a mill!

Everhopeful35 · 02/11/2020 21:05

@Hazlet2 Thanks for the info on ARGC - I'm still one if their patients, so perhaps if my levels haven't gone down and Dr S won't prescribe Humira, ARGC will. That's really useful to know. Good luck in Humira too!

@KtAgs Such wonderful news that your scan went well and everything is on track for where it should be!!

@VenusStarr Good luck with your appointment! I believe mine's around 4ish.

@Lalaifa Thanks for the info on the hydroxy, that's good to know!

KtAgs · 02/11/2020 22:01

Thanks for the well wishes all. I really appreciate it.

@Lalaifa I've always wondered whether I'd be in the same room as a forum buddy. I was on the end next to the radio speaker. If only I'd known - I would have said hello in real life x

OP posts:
Lalaifa · 02/11/2020 22:11

@KtAgs I think I know who it is. Short curly hair? I was in the middle with a blue jumper.
Great news about the scan! You must be so happy.

LRL12 · 03/11/2020 06:23

That’s great news @KtAgs
Thank you @VenusStarr
@LookingforAnswers86 I only had to do a loading dose for 2 days before we could start trying so just depends on the plan he gives you,
How are you @Eeviee
Xxx

Jellystar23 · 03/11/2020 07:21

Wonderful news @KtAgs!!
I’m the same as a couple of the others @LookingforAnswers86, I had a two day loading dose and he said I was ok to try whenever I felt ready.

Does anyone know if the clinic opens on weekends for intralipids/scans? Also, has anyone who lives further afield had any of the scans done local to them? Mainly the 6 and 10 week ones as I’d be there having intralipids the other weeks anyway. Just trying to make a plan now, rather a than find I’m worrying/stressing about making the 8 hour round trip every fortnight when it could be once a month.

Eeviee · 03/11/2020 07:30

Thanks ladies for your replies. I went for my scan yesterday morning, there was a yolk sac, fetal pole and a heartbeat. I burst into tears, I've never had a heartbeat. I was measuring exactly 6 weeks.

Last night I started bleeding heavily and I've passed tissue. It's over. I can't believe it. I don't think I can keep on doing this.

Jellystar23 · 03/11/2020 08:44

Oh @Eeviee! I’m so so sorry. It’s such a cruel thing. Be kind to yourself over the next few days - it’s heartbreaking and we all know how you feel right now. Sending you lots of love xx

VenusStarr · 03/11/2020 09:06

I am so so sorry @Eeviee ❤️ this is so cruel. Sending you lots of love xxx

VenusStarr · 03/11/2020 09:11

I don't think they are open on weekends @Jellystar23. I'm pleased to hear about the loading dose too. Are you starting ttc again now?

Everhopeful35 · 03/11/2020 09:14

Absolutely gutted for you @Eeviee 😔 Can you get back to the EPU this morning? x

Chickjen · 03/11/2020 09:33

@Eeviee I'm so sorry this is happening to you, and I don't want to make it worse, but if it was 'just' clots you passed then you could still be pregnant. I know it feels impossible, and I am so sorry if this drags out the torture, but maybe you should get another scan before you stop the meds? I went for a scan with Mr S once when I had bleeding and he was over the moon he had just seen someone with full bleeding and clots and yet still pregnant with twins. From my own pregnancies the heartbeat stops weeks before the pregnancy actually passes. Again, sorry if I'm making this worse xx

Jellystar23 · 03/11/2020 09:37

@VenusStarr well we were going to wait a month or two but my husband decided to stop waiting and putting life on hold all the time - hoping a bit of spontaneity may give us some luck 🤞🏻

Chickjen · 03/11/2020 09:51

@Jellystar23 I'm so pleased Mr S has a plan for you and a possible explanation. I thought the same as you, could I get the intermediate scans elsewhere, but when it came to it I found I wanted to see him in case something was wrong and I wanted him to have the full picture so he could tailor any future treatment. As it happened I did have some bleeding he prescribed something for which I doubt I would have got elsewhere. But then I am much more local so travelling wasn't a factor.

Lalaifa · 03/11/2020 10:13

I am so sorry Eeviee. It's so cruel. Sad

Chickjen · 03/11/2020 10:17

Just catching up! congratulations @KtAgs and good luck to all those with scans or results appointments this week.
For those on Humira, if it helps justify the cost, I paid nearly 1k for it about 18 months ago, and that was after shopping around all the local pharmacies.
@Everhopeful35 so sorry about your PGS results, I think we spoke once of this before so sorry if I am repeating myself, but I have a friend who had a failed IVF cycle because the eggs collected would not fertilise, they were described as being the wrong shape and colour, and she went on to conceive her son naturally a few months later. She tried Chinese medicine but I'm sure there are plenty of other less drastic tweaks you can make, there was a lot of chat about this a while ago, and I can't remember most of it, but a spoonful of tomato purée a day and beetroot juice spring to mind - that's for both of you.

KtAgs · 03/11/2020 10:17

Oh @Eeviee I'm so sorry 💔. You know your body best but is there a chance the pregnancy may continue? I'm sure the clinic would give you some advice (stop aspirin and double up on cyclogest), including holding onto anything you've passed? I've everything crossed for you. This is so unfair x

OP posts:
Rebecca9876 · 03/11/2020 10:36

@Eeviee I was heartbroken for you to read your message. As everyone here has said, we know what you are going through and you are not alone. And as others have said, if there is a chance the pregnancy may continue perhaps it is worth speaking again with the clinic? And if not (I hope so much that is not the case) you have come further this time than before, don’t lose faith. It may well be that the clinic can amend your plan or try different meds for example. Sending you so much love at this horrible time xx

Everhopeful35 · 03/11/2020 10:37

@Chickjen Thank you so much for sharing that story! It gives me some hope that it can just work out. Our clinic haven't been able to get to the bottom of it, because I respond well to IVF and have a good ovarian reserve. We've also tested my husband to death and can't really find anything wrong - he even did a sperm aneuploidy test and that came back clear last week. The embryologist admitted they'd had meetings about our case because it was 'really interesting' and they'd not seen something like it before 🙄 Hoping it was just very bad luck abc perhaps my body just not responding well to IVF?