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Immune/NK issues - aka Pred Thread no. 21!

997 replies

Tee4me · 04/09/2017 15:17

Roll call for all moony faces!! 🌝🌝🌝

Waiting for our rainbows 🌈❤️💛💚💙💜

Tee4me
Age: 34
TTC DC#2 since December 2015
x2 MCs (second was 'missed')
DS turns 5 this month 😱
Seeing Dr Shehata - diagnosed with Hypothyroidism and aggressive NK cells
Currently on cycle 2 of Pred and week 6 of Thyroxine
CD10, expecting to ovulate at the end of the week 🤞🏻🤞🏻🤞🏻

OP posts:
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ferntwist · 07/12/2017 17:54

Thank you. So good that all was well with your scan. We found out I had a major anomaly after our third loss, a 7.1cm uterine septum. Now thankfully removed after two surgeries.
Great that you can now focus on getting your BFP. Your follicle count is fantastic.

ferntwist · 07/12/2017 17:56

Great article! Thank you Poppy

PoppyJ1 · 07/12/2017 17:58

Oh @ferntwist that must have been a terrible ordeal for you. I have a friend who had a similar problem and had 6 MCs followed by two beautiful kids. Did your docs say that was likely the main cause of your MCs? With that removed your chances are excellent.

ferntwist · 07/12/2017 18:03

I hope so Poppy. Different doctors said different things about the septum, although at 7.1cm it was almost the full length of my 8cm uterus with a thick base, so they all said it was best to remove it. Sadly I had one more loss after the first op and then two after the second, although one was Trisomy 15 so would never have lived. This pregnancy is my first with pred and heparin and taking it easy (no gym, reduced hours at work from week 7) and it seems to be working, although we’re not there yet.
I hope you’re expecting again soon, it must be so hard with your partner away at key times.

PoppyJ1 · 07/12/2017 18:11

Argh, don't you wish docs would just AGREE! I'm so sorry to read in more detail what a terrible time you've had ThanksSeems you have covered all bases so I'm looking forward to your positive 12 week update very soon. Yes, DP's travel has been a nightmare but he has left that job now and from Dec 18 we have no more gaps until I'm away from him in late Feb (which is not a fertile window! Boom💥

ferntwist · 07/12/2017 19:51

Poppy woo-hoo, festive ttc wishes to you! Wink

harrietm87 · 07/12/2017 22:24

Hi ferntwist huge congrats on getting to 10 weeks! Brilliant milestone! I didn't start tapering off the pred until after 12 weeks. I was on
25mg a day and went down by 5mg every 4 days so took a few weeks to get off it completely. I actually felt better and better as my dose reduced but it affects everyone differently as the long list of possible side effects shows! Maybe it's because you've had more of an abrupt drop? Also it masks morning sickness so could be that as you reduce the pred your morning sickness is coming through?

Hopeflower · 08/12/2017 14:16

Hiya,

Harrietm87 did you have many side effects when you were on the pred? I have ballooned and my face is like a full moon. I was wondering if it took long for the side effects to go (or if my face will stay a full moon)? Xx

ferntwist · 08/12/2017 19:43

Thank you harriet. I’m a bit scared that coming off the pred will mean the baby doesn’t survive again but I guess I have to follow doctor’s orders. I’d much prefer to stay on for longer! I think you’re right about the sickness, as I’m feeling it more now, especially in the evening. Hope all is going well with you and you’re feeling rested xx

harrietm87 · 11/12/2017 19:12

Hi hopeflower yes moonface is a typical pred symptom! My face did get fat but not noticeably because I just put on weight EVERYWHERE - 10kg in first 12 weeks! The pred made me starving and bloated. I looked just as pregnant at 12 weeks with the bloat as I do now at 23 weeks. Luckily didn't have any of the other side effects like insomnia though, just raging hunger. Good news is it stopped once I was off the pred and I haven't put in much weight since, so hoping it evens out over the pregnancy.

Hope everyone else is doing well.

Hopeflower · 12/12/2017 07:59

Thanks so much harrietm87, that makes me feel better. Never appreciated how strong the pred were. Must be lovely to be 23 weeks..congrats xx

harrietm87 · 23/12/2017 18:02

Hello everyone, hope all is well and you're all looking forward to Christmas!

@Drttc how are you doing? I think of you a lot as we're at such similar stages - I'm 25 weeks tomorrow, bump becoming more obvious and baby moving alllll the time. I'm at my mum's for xmas and being completely pampered!

And @Bala03?

@Hopeflower and @ferntwist hope you're coping ok with the pred!

Drttc · 25/12/2017 15:46

Hi @Harrietm87! Merry Christmas! Doing very well thank you :-) 26 weeks tomorrow and absolutely enormous lol. Have put on about 15 lbs so weight gain isn'tastronomical... Looks like I've gained twice as much! Still managing to run which is such a change from my pregnancy with DS. Do you feel like it's going by more quickly now? Not long left...!

Merry Christmas everyone!

harrietm87 · 10/01/2018 08:46

Hi everyone just thought I'd check in and keep the thread going! This was a lifesaver for me so hoping we can still pick up some newbies along the way.

I'm 27+3, bump getting bigger but otherwise feeling well and putting the difficult pred days behind me!

Hope everyone is well.

Drttc · 10/01/2018 09:30

Hello everyone! Hope you’ve had a great Christmas and New Year.

Officially in the third trimester now (28 weeks+1) - getting loads ready around the house and prepping freezer meals :-)

Hopeflower · 10/01/2018 11:00

Happy New Year 🎉 congratulations ladies. Really not long for you both. I am off the pred now and have my 16 week scan tomorrow with Mr S. still feel paranoid. Does that feeling ever leave you? Xx

harrietm87 · 13/01/2018 09:52

Wow drttc that's so organised! Our house is still a building site so I'm a long way off that! Can't believe we're in the third trimester.

Hi hopeflower and congrats! Hope your 16 week scan went well. I started to feel movements at around 17-18 weeks, so not long after I was discharged from Dr S, and since then I've felt completely fine about the pregnancy as feeling the baby move
is a regular reassurance - it does get better! Getting off the pred and progesterone was also great. I had a fantastic second trimester. Starting to get big now so my luck may be running out!

JustLa · 15/01/2018 17:13

Hi all, glad to hear about the success of so many rainbow mamas to be on here!

@ferntwist are you at 11 weeks now? You’re doing so well!! 🙌🏼 Not long until that magic 12 week benchmark although Mr S says 10-11 Weeks is the time he feels you can start to relax!

@hopeflower I had a few pred side effects! Moon face, massive appetite, major bloat, salt addiction, hairy face!!! And a bit of anxiety too but it all subsided when I stopped the pred and it felt a little nerve wracking but also amazing to be coming off it!
The paranoia does subside without you really noticing it, but as one of my friends put it... once you give birth you will always be worried and on high alert!! Lol, that’s what we’re signing up for 😘

@drttc 28 weeks!! Can you believe it?! How wonderful! I’m now 33+5 and hubby is finishing off little diy tasks and I’ve bought most of the things on my over extensive ‘must have for baby’ list.
Baby is sitting wayyyy down in pelvis which is nerve wracking, lots of intense braxtons hicks, very immobile- I’m well into the 3rd trimester and don’t I just know it!
Reflecting on a long 5-6 year journey and it’s highs and lows and wishing everyone the best of luck in getting your bfps and rainbows here safely xxx

(Hi to the lovely Harriett and Poppy too! My oldest pred comrades ❤️❤️)

Newhope · 10/02/2018 07:47

@ferntwist I remember that feeling well of coming off the pred - like you, I thought it would mean everything would then go wrong, the same with the progesterone but both have done their job by the time Dr S takes you off them and hopefully you can have comfort in knowing that it worked for so many ladies on here 

@Hopeflower For me, the anxiety was always there throughout the pregnancy, it's natural after what you've been through, but once I started feeling baby kick and got those daily reassurances and with each later scan it lessened. Hang in there - you're doing so great!! xxx

Bala03 · 14/02/2018 13:57

Hi all,Iam happy to see everyone progressing in pregnancy.happy mama'sSmile.
Its sounds wonderful to see justla,harritem in third trimester and good luck.
Iam 27 weeks and got scan at 28 weeks.baby movements keep me relaxed and positive.although i have sciatic nerve pain then and there.everything going ok.iam rehsus negative and anti d injection next week.iam worried anybody had anti d injection,does it affect baby.as antibodies produced by body.anybody had injection before?
How are u poppy,justla and harritem and drttc.hope everyone fine?.my best wishes other pred mums as well.

geeup · 14/02/2018 18:30

Hi all. I've tried to read the whole thread (hi @harrietm87 - recognise you from our other thread!) but haven't read the previous ones. Hope that's ok. Long story short I've done three failed ivf cycles (one a FET, all perfect t blastocysts) and before my next FET I've booked in to see Mr Shehata to see if his tests can work out why I have recurrent implantation failure. My question is have there been any other women on this thread or others you've met/come across who were seeing him successfully about recurrent implantation failure or only when you've had recurrent miscarriages? Not sure if I'm about to completely waste thousands of pounds but I sense there's got to be a reason the IVF isn't working 😟 glad to hear you're all doing so well!

harrietm87 · 14/02/2018 18:42

Hi @geeup! So sorry to hear that IVF hasn't worked for you yet.

I'm not sure about this thread but when I've been at shehata's clinic there have been lots of women in the waiting room who are having IVF so he definitely treats people in this situation. His theory is that pregnancy loss can be caused by an aggressive immune system and it makes complete sense (to me anyway) that your immune system could prevent implantation in the same way that it affects the success of a pregnancy that has implanted.

My losses were all very early (though one was a mmc so didn't find out until later), and shehata felt that as long as I could get past the 6 week mark I'd be fine, which has proved to be the case (so far - I'm almost 33 weeks).

His tests are expensive but he probably won't repeat ones you've had done in connection with your ivf. You have an initial consultation with him where he discusses your history and recommends which tests to have done, so you could have that and then weigh up how you feel after that - there's no obligation to go ahead.

Most people are on the same plan of prednisolone, progesterone and intralipids. I personally feel that prednisolone was all I really needed. I have autoimmune conditions and that is commonly used to treat other related ones so I feel like that's what did the trick (very unscientific) but who knows.

Do you have any autoimmune issues yourself or in your family?

Best of luck and let us know how you get on. PM me if you want to ask more stuff!

harrietm87 · 14/02/2018 18:44

Hi bala good to hear from you and glad you're doing so well!

I'm rh+ so no experience of anti D but I think it's fairly common and nothing to worry about.

Hope @Drttc @Hopeflower and @ferntwist are all doing well as well!

geeup · 14/02/2018 21:57

Ah thanks so much for your message @harrietm87 I'll certainly do the first appointment and see how we get on. Such great news you're so far along. Must be such a relief to get past viability.
No immune issues in my family I'm aware of but I'm very sensitive if you know what I mean - eczema asthma allergies etc which I swear suggests something about my body over reacting to stuff. Wish I could just try pred as a first option rather than going the full hog with all the intralipids etc!

Adrya · 15/02/2018 14:39

Hi lovely ladies, apologies I disappeared off the thread, I have taken a bit of time off anything online, as reading up on stories, forums etc. was not helping my anxiety levels! And I didn’t want to just moan and winge on here!
I am so so pleased that everyone who’s pregnant is doing so well - I won’t be listing you all, but I’ve read back the full thread, such amazing, positive news! :)
I will be 21 weeks tomorrow, having a little boy, and so far everything has been progressing nicely...I am still finding it hard to relax though as I keep expecting something to go wrong, having good and bad days...but praying everything stays good!
Welcome @geeup - I have to say these lovely ladies have kept me sane whilst trying on this protocol and throughout the first few weeks of pregnancy...also, I am under Dr Shehata on the NHS and have not been offered intralipids, so not sure how much they help. I understand it’s something he offers to his private patients only, so you might be able to refuse them? Wishing you best of luck and keeping everything crossed for you
xxx

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