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Immune/NK cells - pred thread 30

999 replies

Sezmarelda1 · 04/09/2022 16:08

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

OP posts:
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VenusStarr · 07/11/2022 06:50

I'll join you on the pity party @InvisibleDreamer I'm sorry that you might miss getting a FET in this year ❤️

We've had a disastrous round. It's all a bit complicated but I ended up low dose stimming for my lining, finslly got it ti just bdlow 8mm, collecting a few eggs but only one made it to day 5 as a compacting morula, so we defrosted my last embryo and it degenerated after the thaw 💔 so they put that and the morula back as a double transfer. It's otd today and I have a blood test but I just know it hasn't worked.
This whole year has been focused on trying to get to transfer. I've achieved absolutely nothing and now have no embryos left. I'm pretty sure my dh is ready to stop trying now. I've not coped well at all these last few weeks. Just can't believe we're 5 years ttc, 6 losses and absolutely nothing to show for it. I'm broken.

Ifitistobesaid · 07/11/2022 10:55

@InvisibleDreamer sorry you won’t get to do the FET this side of Christmas. It’s such a slow process doing all these tests and just getting to the point where you can transfer.

@VenusStarr This must be such an emotional day for you and your husband. I am thinking of you and have everything crossed xx

seven201 · 07/11/2022 11:39

@InvisibleDreamer I'll join the pity party too. We've been trying for dc2 for very nearly 5 years and it feels like we haven't achieved anything too. Although when I fully reflect there has been progress made. I had a whole year last year where it was mainly testing and not allowed to try. Throw in Covid delays, cancelled cycles, waiting for a space for ivf all take its toll. I've not been someone to want a break, it's been me wanting to go again straight away every month so it's infuriating for everything to take so long. And the rollercoaster of miscarriages of course.

Thinking of you @VenusStarr . Not an easy day to get through. You still have a chance.

LuckyNo14 · 07/11/2022 19:33

I’m so sorry to read that some of us are having so much heartbreak. Just know, that you are never alone ❤️

@VenusStarr thinking of you today xxx

jigglejiggle · 07/11/2022 22:40

Hi. Has anyone done IVF through CRP? Hoping to hear some experiences, as I know they only started doing this recently with Kings Fertility. I'm a bit undecided whether to go through IVF with them or look for another clinic. Any advice greatly appreciated!

InvisibleDreamer · 08/11/2022 04:25

@VenusStarr I’m sorry your round has been so shit. I feel your frustration at the years of trying it’s totally unfair and it really shouldn’t be this hard. I was a few months off turning 36 when we started properly trying & I will be 40 in the Spring. I hope it’s some comfort that you are not the only one slogging away at it all.

Tgrf55 · 08/11/2022 07:40

@jigglejiggle we were booked for IVF via the clinic and Kings in August but i fell pregnant in July so we didn't go through with it in the end. I preferred to go via the clinic though, for me i just felt it would be easier as the clinic know everything about my test results etc and i know everyone there and it feels more personal to me. It totally depends on other factors too though like how far away you live etc. I know i would have trusted them 100% though!

Sorry to hear of those struggling and sending love ❤️

VenusStarr · 08/11/2022 11:58

@InvisibleDreamer ❤️ it's just shit isn't it. I think we're pretty much done. The beta was negative, don't think either embryo even attempted to implant. We're just going to focus on us for a while, book a holiday for early next year and just live a bit. I'm obviously gutted but actually feel a bit of relief that I don't need to go down to the clinic or live in constant anxiety. I think I've been in survival mode for so long so I'm looking forward to some peace.
I don't feel fully ready to close the door on us having a baby so we've not made the decision to stop, but our actions are to stop, at least for the next few months.

Thanks for the lovely messages and thoughts ❤️ it's shit being on the wrong side of the statistics x

Tgrf55 · 08/11/2022 20:32

@VenusStarr im so sorry you’re having to go through this. I think taking a break and having a holiday sounds like a good idea. A break from the clinic will do you good. It’s consuming and you deserve to live your life without that constantly taking over. Sending you lots of love and positivity for your rainbow baby. Xx

InvisibleDreamer · 09/11/2022 01:00

@VenusStarr a break sounds like a good idea plus it’s a chance to get into a better physical & mental state before looking at next steps.

InvisibleDreamer · 09/11/2022 16:35

Anyone been tested for thrombophilia? Finally got hold of clinic and been told this is what they want to test me for. TBH I was expecting they would want to do a bit more than just this? I’ve had basic immune testing and already been tested for APS so assuming this is different? Does anyone know what treatment is of its positive? I’ve been told I can ask GP to get it done but might just wait until my consultant appointment next week as it takes about 100 years to arrange anything through GP anyway.

Sezmarelda1 · 09/11/2022 20:37

If you've had the standard NHS recurrent miscarriage blood tests done @InvisibleDreamer you may have already had the thrombophillia screening, I'm sure mine included it. I may be wrong but I think the treatment is blood thinners like Fragmin or Clexane.

OP posts:
Sezmarelda1 · 09/11/2022 20:45

I just checked what I had done @InvisibleDreamer - I had the lupus anticoagulant blood test, plus antithrombin, prothrombin time, and activated partial thromboplastin time.

OP posts:
InvisibleDreamer · 09/11/2022 21:51

Thanks @Sezmarelda1 I’ve not had a recurrent loss panel but I have definitely had the lupus test. I can’t see the ones you have mentioned anywhere so it looks like I do need to do them. I suspected treatment would be blood thinners. I’m a little bit worried if this is all the additional testing I’m going to have done though. So far I’ve just had thyroid, rheumatoid factor, anticardiolipins, ANA plus Beta-2 ABS IgG & IgM (not sure what Beta-2 is for but was normal). We also both had a genetic test done which I think was to look at any inherited conditions but I can’t recall the name of the test. I just have this fear of missing something important but I don’t won’t to go down the route of some of the more controversial tests/treatments yet as I don’t feel there is enough evidence for me but I’m not ruling it out if I have further implantation failures/losses. I’m just hoping I am covering all the basic immune tests. I really don’t want to miss something obvious, I would only blame myself if I had another loss and I missed a simple blood test/treatment.

Sophi81 · 09/11/2022 22:06

Hi everyone

I hope you are all well. I'm sorry I haven't posted in a while but things have just been really hectic, frustrating and emotional at times.

Firstly I want to congratulate everyone who is pregnant. I've said this many times before but I really truly am very happy for you all. It always gave me that hope that one day it will happen for me too. I had a quick read through the messages and noticed soooo many of you are expecting how amazing is that 😃

@Grateful03 was so lovely to see a message from you and to know you were thinking of me when Im going through a tough time. I hope you are doing well x

@VenusStarr really sorry to hear what you are going through. Thinking of you x

As for what's happening with me.. well as you are aware in my previous posts I suffered from overstimulated ovaries after my last superovulation which was mistaken as appendicitis by A&E 🙄. Dr Edge advised to take a break that month to let everything settle and to book another appointment the following month so they can review my plan again for like the 10th time 😂. Went for my scan but didn't end up going down the superovulation route as we missed the cycle to do that but decided to try naturally as advised by Dr Edge as there was still a follicle there... was very stressful and frustrating going through all this again and we also discussed the IVF route which CRP were happy to support us with this month... but then this week we found out I'm pregnant 😱

Like how did that happen?? I think we were both in shock! I had my intralipids today and Dr Edge and the other nurses personally came to congratulate me as they were so happy to hear the news after sooooo long.. But since the positive test came the fear! I literally didn't sleep for 4 days, suddenly I got insomnia! Like how did that happen? I'm just constantly in fear now worrying and stressing what's gonna happen at my 6 week scan. Will they find anything or will I get bad news especially since I have nooo pregnancy symptoms at all! I just can't shake these feelings. What if it's not a good quality egg considering my age😩. Does anyone else feel like this and how do you manage it? Surely this isn't good for the pregnancy. This is going to be the longest 2 week wait!! 😞

Tgrf55 · 09/11/2022 22:55

@Sophi81 congratulations!! That's amazing!! Really hoping your scan goes well, I'm sure it will. Are you taking pred? I barely had any symptoms until 8 weeks and even then it was mild and very on and off.

As for the anxiety, you'll have this all the way through. I thought i would be better after my 20 week scan but if anything I've been worse because now i can feel some movement i obsess over how much i feel on each day and convince myself of a problem. Its so hard. I think anyone whos been through what we have is the same though so dont beat yourself up about it its totally normal and understandable!

Keep us posted, crossing everything for your scan xxx

Sophi81 · 09/11/2022 23:07

@Tgrf55 awww thank you. I'm on pred, metformin, aspirin, Cyclogest and GCSF injections!

You are right because I said to my husband I should be fine after my 6 week scan but deep down I know I won't be as I'll be stressing over the next scan etc. 😩

Wow well done for getting to 20 weeks😃 halfway there now really. Did you find out what you are having or keeping it a surprise 😃

Will be interesting to see how this pregnancy progresses for me. I guess like u said might be too early for symptoms

Tgrf55 · 09/11/2022 23:20

@Sophi81 the pred masks symptoms so you probably wont get many at all. Which is a blessing and a curse at the same time!

Thank you, no we've kept it as a surprise. Im 21 weeks now but still constantly fretting about movement etc. Never gets easier xx

Sherbert4 · 09/11/2022 23:54

Hi Sophi81, huge congrats. I was Grateful before but changed the username after a horrible few weeks. More bad news my end I’m afraid similar to Venus Starr sadly. Congrats though to you and all the other good news stories on here lately. I dip in and out x

Sherbert4 · 09/11/2022 23:59

Wishing you all the best for your journeys and pls keep sprinkling lucky thought dust for those of us still trying thank you x

Sophi81 · 10/11/2022 02:07

@Tgrf55 I really do hope that is what it is. I've had a couple of losses up to 6 weeks so it just makes me really nervous!

@Sherbert4 thank you, although I don't feel like celebrating anything just yet. It's so weird how we wait patiently and endure so much heartache for this moment and when it arrives it comes with so much anxiety and stress that we don't get to enjoy it. I really am really sorry to hear you are having a difficult time. I will definitely be thinking of you both @Sherbert4 @VenusStarr . Xxx

Annie808 · 10/11/2022 13:31

Hi all - new to this thread! And would really appreciate some advice!
I’ve been diagnosed with slightly high NK cells and high TNF-alpha cells with Dr.S. All my other standard tests came back normal.
Its been advised that I start with x2 Humeria injections. Bit freaked out as I thought I would just get going with pred. Side effects and reading about humeria drug in general is quite scary!
Have any of you had this injection? Any side effects?

Ifitistobesaid · 10/11/2022 15:57

@Annie808 Welcome to the thread. I did take humira though I was very hesitant about it. I had no short term side effects but do worry about potential long term effects. It’s difficult to know whether it’s right to take it.

Annie808 · 10/11/2022 18:23

@Ifitistobesaid thanks for your reply! I’ve just picked it up so decided to go ahead, at least with the first dose. Decided if I skipped it and then had another miscarriage I would be kicking myself thinking what if. Just difficult to get my head around putting lots of medicines in my body when there is no guarantee it will help x

Sophi81 · 11/11/2022 02:50

@Annie808 Hi Annie welcome to this thread! I'm not sure what Humeria injections are but I know exactly how you feel about reading side effects etc as I have been put on GCSF injections and it freaks me out too but I have just been taking it in case somethings happens and I kick myself thinking what if! I have been told by CRP that every 2 weeks I have to have a full blood count done whilst on this drug. I also hate pumping myself with all these drugs and wondering what effects it's having on me and like you said there's no guarantees. But I guess I got to just trust in the clinic as I'm guessing I'm not the only one taking this drug. 😬. Good luck with everything x

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