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

[Tee4me]

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 🤞🏻🤞🏻🤞🏻

So I wanted to post about my recent OPK issues on cycle 2 of Pred and hopefully reassure/inform anybody having the same issues:

I usually have a tidy 27 day cycle, and always got 2 x flashy face Clearblue OPKs followed by a static between CD12-14.

However this month, cycle 2 on Pred, I got a flashy OPK really early on CD9... with a static face appearing late on CD16 (meaning I ovulated CD 17).

Obviously I'm relieved to have ovulated - better late than never - but I was curious about what happens if I didn't ever see a positive OPK... When would I start the Pred if there was no clear indication of ovulation??

So I emailed Nadia at Dr S clinic, and this was her response:

"In my experience, without a positive ovulation test Mr Shehata has said not to start the steroids. If you took steroids last month, this could have delayed ovulation. Taking steroids before ovulation or for longer than 10 days may do the same next month, so it’s worth having a clearer picture before taking"

So the message is clear = no positive OPK - no steroids!

Of course this is worrying if there's a chance the OPK is playing up or LH surge is too low to detect... and you are in fact pregnant!

So I do think anyone in the same position should double check again with the Clinic about what they should do - as, in my case anyway, the first couple of weeks are most dangerous for me and my NK Cells so I really need to be on the Pred from O day!

Anyway - thankfully I did ovulate... so fingers crossed I baked an extra juicy mega egg and this is the final time I worry about all the O crap :-)

Hey Luna! I had so many problems with the clearblue smiley faces it ended up driving me crazy. I really recommend trying the old school ovulation alongside things so you can look back and see a clearer picture. I felt like it really helped me understand my cycle better to see the line progression all the way to when it was as dark or darker than the control line.

Hi everybody, hope you're all okay and enjoying the start of the weekend. Just a quick question, wondering what dose of pred everyone is on?
Please forgive me if it's elsewhere on the thread and I have missed it.
I'm about to start taking for the first time and my doctor has prescribed 20mg daily in the morning with food.
Thank you!

That’s what the girls are telling me too Drttc... next cycle I will - after a tutorial from Soph, the charting queen!!!

Hi there @ferntwist welcome Hun! Hope you’re ok - if you’re on here taking Pred then I’m guessing things have been tough! 😭

Most of us are on 25mg for 10 days - from the day after ovulation - then we take a test and either stop if BFN or keep taking (plus progesterone pessaries) of positive...

However our dear Poppy is on a permanent 5mg dose...

Whilst some of the girls are magically managing without and are pregnant, like *Drttc!

What’s your sitch? Xx

Hi Luna and thank you so much for welcoming me. I've had six miscarriages, most in week 12. At first it was blamed on a uterine septum, but as I've had more losses since two operations to successfully remove the septum, we've been looking for more answers. I've been seen at Coventry Recurrent Miscarriage clinic and had the recurrent miscarriage tests locally too. Although my NK tests were normal, since my most recent loss, Prof Brosens at Coventry has prescribed heparin, progesterone and pred. Heparin from the first positive test and pred from week 7, to try to get me past the elusive end of 12 weeks.
Excited this could finally be our lucky seventh time.
Good luck everyone and I look forward very much to hearing how we all get on.

Just so you know @ferntwist - my NK Cells were normal count too, but their behaviour was extra aggressive in every day situations and in particular when a pregnancy was simulated in the patry dish...!

I think Dr S at the Miscarriage Clinic is one of the few docs who tests for NK Cell behaviour in addition to the number/count...

He told me that on the NHS I may never have found I had NK Cell issues because of that!

Sounds like you’ve been put a cracking protocol- many of the girls here are on Heparin (or similar) - and the Pred will certainly relax your body down (so if you too have crazy NKs like mine they will calm the fuck down!)

I’m really sorry you’ve had so many losses Hun, you are in excellent hands in Coventry and you sound so brave and positive and strong 👊

I hope this next little one is The One and that they’ll be no more trauma for you

Stay connected on here, we are a helpful bunch (I’m actually the most useless one - the others are like flipping doctors!)

❤️❤️❤️💪

Welcome @ferntwist and so sorry for
your losses - I can't imagine how awful it must be to have had six get as far as 12 weeks. I've had 3 and all of mine were early - 4 weeks, 5 weeks and a mmc discovered at 7 weeks.

I'm on the same protocol that luna mentioned and seems to be working for me so far (I'm 11+2 today).
Also like luna I've got normal numbers of NK cells but they are especially aggressive in pregnancy. Really glad you've found us and fingers crossed the pred will sort you out. TBH I don't think they really know how it works but it does seem to.

So you are 7 weeks now?

Hi Luna and Harriet and thank you so much for your replies, I appreciate it very much.
Very sorry to hear of your losses. It's heartbreaking each time for all of us and these boards are a godsend.
I'm not pregnant again as I had to wait a cycle after my last loss for a follow up biopsy at Coventry. Looking forward to having another go next cycle (not long to wait now), armed with my new drug protocol and zillions of needles!
Sending everyone very good wishes and looking forward so much to following the threads.

And Harriet, 11+2 that's fabulous. So exciting!

Hi all, sorry it's been a while!

Welcome @hopeflower , I hope you find this group supportive and that your periods settle a bit.

@Bala03 ! Lovely to hear from you again especially with such lovely news 🙌🏼⭐️🌈
The cramps are normal and great to hear you had a positive scan. I was a nervous wreck for the first few weeks, the anxiety started to slowly ease up from about 10 weeks so hang in there!

@Harrietm87 This is what I was talking about, longer hair everywhere! The tops of my thighs are suddenly hairy and my toe hair actually hurt from being swept in the wrong direction in my sock the other day 😂

@Ferntwist welcome in! I'm so sorry for your shitty run with pregnancies. How disappointing to have had an operation only to be let down again.
I am the same as other girls, 25mg (5 tabs) each morning. Omeprazole before breakkie (request that if you haven't got it-it protects stomach from pred) and Pred after.
Can I ask, are you finding out about losses at 12 week scan but the pregnancy stopped progressing earlier than that?
The heparin will help the blood flow to the baby, stop any small clots from forming and should also help the placenta to implant etc. It's great you're on that! Progesterone will strengthen your womb to also help implantation and development and like the other girls said the pred will help your womb accept your partners DNA without fighting it! I believe (as do some scientists and specialists) that the pred is responsible for handling a host of other issues that we may not be aware of, so I really think you've got a lot of potential problems covered 🙌🏼🙌🏼
Sounds like a winning combo!
I had 3 MC's - 1x early 5-6 weeks and two missed MC's at 11-12 weeks and 9-10 weeks (but all stopped developing at 5-7 weeks) Am on pred, progesterone, heparin, aspirin, intralipids and am 17 weeks pg today 😊🌈 (stopped pred now)

@LunaB I've found you SO helpful! ❤️ Especially for making me chortle and keeping spirits high 😊

We have a FB page for women that have suffered multiple MC's and are now on treatment TTC or PG and those on this board are welcome to join. Its not ideal for prudes as there's adult talk in there 😂 And get get pretty chatty. Just PM Seeking or me if you would like to hop in

Xxx

It's lovely to have found the group that are supportive and going through similar problems xx

Just thank you so much for all that excellent information. I'm so sorry about your losses and what wonderful news that you are now at 17 weeks.
Although I haven't had scans with all my pregnancies, we have started having them, so we know that the last two pregnancies stopped growing at 9 weeks and 7 weeks respectively (healthy heartbeats up til then). For some reason I never miscarry until just before my 12-week scan.
What a great thing it is to have found this thread, with so many informed and experienced women who are generous with their knowledge.
Thank you!

No worries Fern, just relaying what I've found and been told- may not be gospel as my specialist tends to vary what he says 🤣
If baby stopped developing at 7 weeks, perhaps it could be an idea to question your specialist on why you wouldn't start taking it earlier. Pretty sure it takes a few days to kick in and it would probably be good for it to cover that 6-7 week zone.
Perhaps you could ask to start it on bfp, 4 weeks? May be worth asking about at least :)

And thanks for your kind words! 💕

By 'it' I mean pred lol

@JustLa.... the swept toe hair 😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂 you’re killing me

@ferntwist I agree with Just... find out why you aren’t taking the Pred earlier...🤔

@Drttc I feel I’m so out of touch with you! How are you babes? 😌❤️❤️❤️❤️

Awww hey Luna ! Where are you in your cycle now? Good luck with the charting!

I'm just quietly chugging along! We have our nuchal scan on Tuesday. Can't believe it's so early! I'll be 12 weeks by LMP but may be measuring a little ahead.

Things have been so hectic with family events that no ones even looked my way- let alone clocked that I'm pregnant! Our next chance to tell family in person wouldn't be until I'm nearly 14 weeks and it's another members birthday weekend. I feel a bit scared as I'm worried they're going to be beyond shocked. I was able to hide my little belly really well last week but it's becoming a real possibility I'll be turning up to that birthday looking full on preggo... Plus our SIL's are weirdly competitive about everything so we know they won't be happy that we're expecting as they've voiced they want baby #2 soon. When we announced we were pregnant with DS they stormed out of the room and hid the toilet for 15 minutes. I know we shouldn't care but we've only just started to improve our relationship with them!

And thinking about this is a distraction from worrying about the actual nuchal scan. So scared :-(

@poppy and @ drttc how its going ,i had some dull period pain ,cramping yesterday night for hour.its gone and accupunture really ease my pain.iam little nervous about pain.
@justla very happy you are in 17 week nearly end of first trimester.hope u can start enjoying pregnancy.iam in 7 week really nerve wreck and everything worries me.
@ harritem its wonderful know you are in 11 week.not been for while.happy for u.
@LunaB thanks very much.yes,eight months long,first few month on steriods,i checked regularly for pregnancy,note every symptoms.later months,i wasnt keen and frustated at one point i felt if it will happen anyway it will.my pregnant month i checked pregnancy 3 days after missed period.
even my ovulation had problem with clear blue.some months i have 8 days high fertility and then peak.when i started taking steroids two days past positive ovulation testp and extactly 10' days. Came back normal
I think first few months, our system are adjusting to medication,once it get used,cycle becomes normal.

@hopeflower ,@ ferntwist welcome.sorry for loss.people here are really support very well.
@ferntwist Dr s says prednisolone should be on blood during implentation.its better to start 2 days past ovulation.in my case,i have been taking steroids for 7 months.he told me give a pass for a month ,enough medication in blood.got pregnant on same month.started steroids 5 th week.iam in 7 th week,little cramps,dull aches worried ,waiting for 8 week scan.hope this helps u.

@ lunaB sorry typing error,after ovulation i took medication extactly for 10 days.next cycle,ovulation little delayed.then,pretty much regular.

Hello ladies, sorry for the hiatus will make an effort to post on here aswell as the Facebook group. Hi to Bala / ferntwist and hopeflower. I am so sorry you have had a shitty time, the ladies in here have all been very welcoming to me and it really helps to talk things out with ladies going through the same things xx

Just for some background I am on Dr. S complex plan with 25mg pred and thyroxine +aspirin. I have high nk cells, aps, gene mutation and somewhat wonky tubes. I had 6mc +1 ectopic but most around 6 week mark. Reading the posts from girls on here that are preggers and doing so well is soo inspirational, and till I’m in the same boat we will solider on!! 👍🏼 😘

Bala, Thank you so much for updating me! It really helps to know there is light at the end of the tunnel and you are that light 😊😊😊

Drttc.... I’m not happy that you’ll get grief when you announce! What the fuck! Fuck off to them! I can’t believe you are 12-weeks... I remember when you joined the group and told us all you were preg and going sans Pred! Look at you now! Well done for holding your nerve and doing what was best for you and your family 👊👊👊

when might you get implantation pain? 🤔

🐗 @Kakaboo ❤️