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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 · 10/11/2017 20:35

Thank you ever so much for sharing your story and I'm so sorry to hear about your losses. How wonderful to have finally heard a heartbeat this time.
I'm under Prof Brosens and Prof Quenby at Coventry (also NHS) and my protocol is progesterone pessaries morning and night, Clexane injection once a day (I think that's similar to Fragmin?) and 20mg of prednisolone in the mornings. I'm
also self-medicating with folate (instead of folic acid) and Co-Q 10 enzyme as well as pregnancy vitamins. I'm a bit unusual on the board as I've only just started taking pred this week after getting our heartbeat, as that is what Prof Brosens advised. I'm also finding it wakes me up in the middle of the night!
When is your next scan? Looking forward to updates.

ferntwist · 10/11/2017 20:46

P.S. Should say I had three NK biopsies at Coventry and two were normal, one high.

Adrya · 10/11/2017 20:48

@ ferntwist, no problem! So sorry forgot to mention the progesterone (duh!) , I’m on 400mg a day! I am a person who’s never taken any medicine, not even for headache or cold and flu, and now I take so much I’m losing track! My next scan is on the 24th, should be almost 9 weeks, as that’s when Dr’s S midwife recommended I have one. Did you say you’ve been taking pred from heartbeat? I don’t think I would’ve seen a heartbeat without it, so you’re in a better space by the sound of it! When is you next scan? Also can’t wait for to hear your positive updates! xx

ferntwist · 10/11/2017 21:12

I'm on 400mg too. So much to remember each day but I like feeling I'm doing something to help my little Teddy as well. I think of it all as his food! Started taking pred this Tuesday after first scan on Monday.
My next scan is on Monday morning. So nerve-racking. I had two good scans last pregnancy at 7 and 8 weeks but then at 9 there was no heartbeat, although the baby measured 9 weeks, so they said it must have just happened. I didn't miscarry for a while longer. This time though I'm armed with pred and Clexane, so have high hopes.
There seems to be so much good news on this board, it seems like a wonder drug.

ferntwist · 10/11/2017 21:13

Will be thinking of you on 23rd and hoping it comes round fast! Time goes so slow when you're pregnant doesn't it? X

ferntwist · 10/11/2017 21:14

Oops I mean 24th xx

Adrya · 10/11/2017 21:43

So sorry to hear about your last pregnancy, but hopefully the lovely drugs cocktail we’re on will help our little beans stay put! Is there a reason they are recommending so many scans, I’m now wondering if I should have asked for one sooner than 24th? God, I definitely suffer with scanxiety, lol! Keeping everything crossed for you for Monday, keep me posted xx

ferntwist · 11/11/2017 08:13

Hi Adrya our second scan is private as an extra reassurance. It's probably not necessary but after my previous experiences I'd really like to know how long our baby lasts. The others are NHS. I know what you mean about scanxiety, it's so strong isn't it? Hope all goes well, fingers crossed for both of us and everyone on the board.

Newhope · 11/11/2017 10:56

Hi Ladies, wondering if I can join please?!
Here’s my journey: 3 miscarriages (2 at 8 weeks, 1 at 15 weeks) over a 3 year period. Went on to have rainbow daughter who’s nearly 2 after seeing Dr S and having his treatment. We’re now on the road to “do we, don’t we” try for a 2nd baby although I think we’re kidding ourselves and know we will!! Both just full of anxiety after our experiences, particularly my husband. I guess you just push through knowing the outcome is worth it.

I found this thread when I was in the depths of despair after of our 3rd miscarriage but only ever lurked! I can see a FB group mentioned as well, is that Trying again?

Looking forward to chatting to you all! xxx

ferntwist · 11/11/2017 17:46

Hello Newhope and welcome to the group. I'm quite a newbie as well.
So sorry to hear about your losses and how wonderful that you have your rainbow daughter. Can I ask what drugs protocol you did under Dr S?

ferntwist · 11/11/2017 17:46

P.S. I don't know any details of the FB group but would also be very interested if it's open to new members.

Phoebe85 · 11/11/2017 19:40

This reply has been deleted

Message withdrawn at poster's request.

Newhope · 12/11/2017 06:20

Thank you @ferntwist. I was on the complex protocol with pred, intralipids, aspirin and the usual vitamins plus thyroxine and we also did super ovulation as some of my hormone levels weren’t great. We started in the Feb and fell pregnant in June. Are you under Dr S too? xx

Newhope · 12/11/2017 06:55

@ferntwist - progesterone too! (Amazing how you can forget!!)

ferntwist · 12/11/2017 08:51

Thank you Newhope and hello Pheobe. I'm under Prof Brosens & Prof Quenby at the NHS centre at Coventry.
Wonderful to hear the protocol worked for you, thank you for the info.
Sorry I can't help Pheobe but hopefully some of the other wise ladies here will be able to.

harrietm87 · 12/11/2017 10:26

Hi newhope, phoebe and any other newbies I’ve missed - welcome!

This thread has been such a massive support from me from going through my third mc to testing to conceiving - I’m 19 weeks today thanks to Mr Shehata!

newhope you should definitely go for another! @Seekingmiracles and @Drttc on this thread are both on their second after a first baby on the protocol - drttc has even managed it drug free this time!

adrya congrats on the heartbeat - it is just so wonderful isn’t it? I cried and cried after I saw mine for the first time but it’s only just started to feel real for me as I’ve started to feel the baby move this week.

Hope everyone else is well - @Drttc how are you?

harrietm87 · 12/11/2017 10:27

Oops bold fail, Soz

Newhope · 12/11/2017 11:49

I’ve heard great things about Coventry too @ferntwist so best of luck to you.

@harrietm87 Thank you for the welcome! And huge congratulations on being 19 weeks pregnant - amazing after your journey! How have you been doing on the pred?

So nice to hear of 2nd babies too! Natural is the dream!! It’s so nerve racking actual taking the step on the rollercoaster again!! 🙈

harrietm87 · 12/11/2017 12:15

Hi newhope! Thanks! I’m off the pred now after tapering from 12 weeks. I think I was quite lucky as the only side effects I had from it were hunger and weight gain - I put on over a stone in the first 12 weeks! But I’ve put on hardly anything since and it’s obviously so worth it.

How old is your first little one?

Newhope · 12/11/2017 14:30

That’s brilliant to hear @harrietm87 and oh yes, the weight gain and moon face!! I suffered really badly with insomnia, caught a lot of illnesses, like shingles (ended up in hospital with it) and had constant nose bleeds so the first trimester was not joyous but so totally worth it! Dr S is an interesting one but don’t know where we’d be without him!

My little one will be 2 in Jan 💗

Do you know the answer to my FB group question at all?

Seekingmiracles · 14/11/2017 13:54

Hi ladies,
Sorry I’ve been AWOL for a while! Hello newbies!! Hope you’re all finding this group useful and sorry for the sad circumstances that have brought you to this thread. But we’re all a lovely bunch!!

Just an FYI we do have a Fb group going too, which is private, so not searchable and no one on needs to know you’re a member. Just send me a pm with your email and we can add you.

I’m now 22 weeks with pred baby #2! And everything is ticking along nicely, thank god! I’ll be glad to be done and dusted after this one and not have to go through all the stress that goes with treatment, ttc and early pregnancy!

Will read through properly now and try to get a rough idea of where everyone is at! Xx

Seekingmiracles · 14/11/2017 14:02

@Drttc a girl!! Yay!!! That’s fab news!!
We also found out gender at our 20 weeks scan. It’s a boy!! So one of each too! I was so gob smacked! Felt sure I was a girl carrier! Lol!! But so happy! And feel very fortunate! I think .... well I’m 90% sure that after this one we’ll be done!!

Btw - I’ve never had a notification except for the @mention that Harriet did!

Congrats to everyone else who’s doing so well! Lots of little heartbeats! Long may they continue to grow and thrive! ❤️

Phoebe85 · 14/11/2017 15:54

This might sound really silly but on this app how do I direct message you?

I don’t have Facebook but could join the group maybe?

I’ve got my first appointment booked with Dr Shehata and would love someone to reply to my previous post? Any help much appreciated, I feel very lost with it all currently! ConfusedBlush

Kakaboo · 14/11/2017 16:06

Hi @Phoebe85 I’m not very good on mums net so not sure how to dm but DR S programme totally supports IVF cycles and they fit in around the whole ivf from injections to transfer- his protocol for ivf are on his website but I think u need a password. I’ve also spoken to woman who are undergoing IVF with another clinic but still under DR S. I think u need a Facebook profile to join the group but I might be wrong on that?? Big hugs hunni xx

JustLa · 14/11/2017 17:36

Hi all and welcome Phoebe and Newhope!

Sorry for the rough rides you’ve had so far, you’re in good company here ❤️❤️

Newhope, I’ve spoken to you a bit on FB 😊

Phoebe, I don’t think many of us are familiar with Mr S’s treatment with IVF, but I met a girl who was getting started on it with him in the intralipids room, not sure how she progressed but she was having intralipids pre egg harvest.
A couple of the girls here may be embarking on ivf while under his treatment.
I think the best thing to do is call up and ask to speak to someone about this prior to booking your first appointment and hopefully they can shed some light on the process for you. Sorry I have no experience with it but hope that helps a little :)
To pm seeking, go to the 3 dots at bottom corner of her post and you’ll see the option to pm.
Yes unfortunately you’ll need a fb account to join, don’t blame you for avoiding FB though! The only decent thing on there is our group haha.

Ferntwist and Adrya, it’s so lovely to hear how you are both progressing! It’s so hard in the early days but gets easier I promise xx

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