Immune/NK issues - aka Pred Thread no. 22!

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

Hey Smrahc48, that’s interesting to hear. I was actually debating whether just to start the cyclogest (Progesterone) once I ovulate and wait for a BFP to start the Pred. I am anxious that the Pred may muck up my cycle and then it’ll take longer to conceive. Since my D+C in August my cycles have lengthened to 30-35 days which is annoying as I was so regular at 28-29 days before. But I’m having weekly Accupuncture to help with that. I guess I just want to get pregnancy now as quick as possible! I’ve only just been given the green light to TTC again, although my partner has been advised to take some antioxidants for his sperm health too.

We have to go back and see Dr S in March if we haven’t conceived on his protocol for two cycles. My AMH levels are quite low for my age so he was talking about the possibility of Superovulation to speed things up depending on how things go.....x

Hey @HappyApple05, welcome back! Best of luck with your dance - everything crossed for you! Glad to hear all going well on the Pred and it’s not mucking Cycles up x

Hi Sunshineblonde1, thank you. I thought you start cyclogest only after BFP and not on ovulation. And if you have decided to take pred, i don't think there is a big difference doing part of it, by taking smaller dose or taking it after BFP... Anyways you are consuming it. Why not follow the right protocol? no offence... Only suggesting...

Sorry to hear you’re poorly @HappyApple05

I got my static smiley yesterday, so the pred starts tomorrow and let’s hope it’s a positive for all of us this month!

I was only considering altering the amount of pred to try to avoid it mucking up my cycles if I’m on it for a while. No other reason apart from that. I didn’t really suffer as such on it last cycle, but my fear is it goofs up my cycles and I’ll be in even more bother.

Let’s just say, google has been my best friend and worst enemy since finding out about the elevated NK cells.

@HappyApple05 I hear what your saying and a very good point. I guess like @Smrahc48 I am worried that it may muck my cycle up and thus take longer to conceive, hence my rationale behind perhaps waiting for a BFP before starting the Pred. Also as my cycles are now varying in length, if it takes months to conceive then that's months of being on the Pred on and off and I don't like the thought of it still :( I know Dr S knows far better than what I do, but I also know there are women on the thread that waited for a BFP and then started the Pred. So I guess I just have to do what I feel comfortable with at the end of the day :( My body and mind seems to be fighting it.

I am on the 'Complex' NK cell plan which prescribes Cyclogest at ovulation and to take for 10 days (alongside the Pred). As you can probably sense, I am still reluctant to take the Pred but I know that if I get a BFP I will suck it up and take it, to tick the box.

It feels like such a mindfield at times!

Good luck with your TTC windows ladies, everything crossed for you :)

Hi ladies. Thought I’d jump back on here and update you all. Today I am 10 dpo and got my bfp 🙏🤞🙏🤞🙏🤞🙏🤞🙏🌈

One step at a time, but for now, at this very moment, I am pregnant.xx

Awww best news ever @Smrahc48!!! That’s one big step of the hurdle done. Everything crossed for you. Do you have to go for intralipids? Or just stay on the Pred? I got my static smiley on Sat so did the dance. But haven’t started the Pred yet.

Best wishes to all 💐

Hey Smrahc48, what a lovely news.... Fantastic....Really glad to hear that.. Wow.. Celebrate it .. Sending big hugs and load of love..

You made my day I had an instinct and kept checking the email for some good news from you gals, it has come true :-)

I hope you'll be booking with Dr.S for a catch up. Not sure what are the next steps.. Wow.. I'm so excited and smiling (from office desk) while typing this...

Hi Sunshineblonde1, I'm on NHS and no intralipids suggested / prescribed, perhaps it's expensive. Let's see what Smrahc48 says and here's to January for the both of us :-)

XOXO
HappyApple05

Oh girls thank you so much for your well wishes. It means a lot.

I am hoping to meet Dr S soon, have emailed his secretary (I see him via NHS) and hope to get an update soon.
Xx

Hiya Wondering if anyone can help me. I am 41 (42 next month) and I have a 6 year old daughter conceived naturally and with no issues however have been trying for baby no 2 for 2 years and have had several early miscarriages. I am being treated for NK Killer cells through Mr Shehata since May 2018. He has prescribed me steroids from ovulation and progesterone (joy!). We tried for a few months but no joy so I am month 3 of the super ovulation program. This month feels promising with 4 follicles - do you know why they ask you to have sex so closely together - Friday Sunday and Monday? if sperm can live a few days. Managed Friday and Sunday but not sure if tonight will work? Also have a burning sensation in my tummy and wondering what this could be also ! Maybe the egg releasing after my ovritelle sat night but not had it before. Its all fun and games but the steroids play havoc with my sleeping so also wondering once you get a positive test how long you have to stay on the pred / steroids for? I asked the nurses and they said as per protocol - so not the best answer! I have spent a fortune on all this and just don't know how to stop ! Feeling hopeful for this month as only had 1 follicle the first month and 2 the second so four feeling like a positive outcome! Is this a good number? Husband had slightly low sperm DNA but nothing major and Shehata not concerned after testing but has taken the vitamins to improve and has got me pregnant three times so hoping all ok ! Thanks in advance, Sorry so many questions Jo the Aussie

Hi @JoeyWally and welcome! Sorry you find yourself here but you are in good company as we are all on our journey's with Mr S . Big hugs.

I have only just started on the Protocol so have not had the Super0 but I know some ladies on the Pred Thread 21 have experience with it. I will tag you into that thread so that you can perhaps paste the above into there and get some advice . With regards to the Pred Protocol, I am on the Complex Plan and it says to take Pred until 12 weeks and then wean off? Were you given a Treatment Programme handout from Dr Shehata which lists out the timeline?

With regards to having sex close together - I think that is just the gold standard when ttc. He wants us to get our BFP as quickly as possible so by law of averages, the more times we do the baby dance around and during our Ovulation window the more chance we have. It can be a struggle boinking relentlessly! My DH has slightly low sperm DNA too and he is on the anti-oxidants. Hope you can get some answers to the SuperO on the other thread and do keep us posted! :) x

thanks sunshineblonde1 that is really helpful.I think I am deaf covered this month. I will check my original sheet though!

@HappyApple05 @Smrahc48 @JoeyWally

Hi lovelies, quick update from me, I got a 'squinter' of a line when I test 11dpo yesterday and a minutely stronger line today. I am not used to testing so early!! So I guess I have me a BFP! Booked in for intralipids on Tuesday, As I have not taken the steriods yet I popped those bitter bastards for the first time today. Obviously extremely early days, and the FEAR is already within me. But will keep you posted.

Hope all are well x

Eeeeeeeeeeek @Sunshineblonde1 this is frigging amazing news. So excited for you xxxxxxx stick bean stick!

@Smrahc48 awwww thanks Hunni - fingers crossed this is a good healthy one eeks 🤞 xxxx

Hi Sunshineblonde1, awesome news celebrate it.. Really happy for you.... Wow.. Hugs to you..

Hey Smrahc48,
Did you manage to get an appt or any further steps? I hope you get to have a 6 week scan?

Hi JoeyWally,
Welcome So sorry you are here hun. We are here to join hands in your journey and to inspire and motivate each other. I don't have any answers to your queries .. Sorry hun.. Wow great news -feeling positive... Wishing you all success and congrats dear.

Update from me: Nothing interesting.
Been on pred for 2 cycles. AF had arrived but a new cycle has started. So cheerful about that. I think i have to be really precise about the boink fest days. Any suggestions? We were BDing throughout my fertile window for more than 7 days in a row last time and i got really sore down there. Omg....
It's really encouraging to see all the BFPs. I'm very much excited about your news gals its inspiring me... Take care you gals and keep us posted.. All is well...

Oops i didnt mean to post a coffee mug for AF..

I’m just joining the new group, hello all.x

@LKM1 hey! And welcome over! Will tag the rest in so hopefully they can migrate over 😃

@HappyApple05 you really made me chuckle with your coffee cup emoji 🙊 Thank you for your good wishes and hugs. It’s such early days, I’ve never had to test this early before! Am on day 2 of the Pred 🤞

Re: boink fest holy smokes!!! I don’t think I would have it in me to do 7 days + on the trot. You go girl!! 🐎We do Day 12,14 and 16 and it’s worked the last two times first round. So I stick to that method. Plus I think any more and I’d have to physically throttle the swimmers out of DH tee hee! I have no idea when I actually ovulate - I got the static smiler on Day 16 so my rational was to cover a few days before and after that window as sperm should last a few days. Dr S recommended that DH ejaculates the night before I am due to ovulate and then on the day put it inside me for want of a better expression in order to get the best swimmers? He did that this time. It’s normal not to ovulate a few months a year so maybe you just didn’t last month? I don’t think I actually ovulated in Dec but we didn’t really put much effort into strategic boinking either then x

Hi! I'd like to join!
Firstly congratulations to all who are getting BFPs! Exciting!

Secondly, I am a bit different in the sense I opted for IVF as I have had one MMC and an ectopic through natural conception last year.

A few months after my surgery in April, I found out I had high thyroid anti bodies that were positive only after the removal of my left Fallopian tube. My Dr after egg collection has put me on 20 mg pred and intra Lipids.

I wanted to get a second opinion so I went to see Dr S and he upped my pred to 25 mg, omneprezole and high folic acid and the others remain the same - clexane, progesterone etc.

I did get a BFP last night 7 days after my embryo transfer but it could be my trigger shot. Will test again next week..

I am feeling a little nervous with upping the pred. I have been assured that it's completely safe but there's always that chance of harm to the fetus and that makes me anxious. When has everyone else been advised to wean off? And any words of comfort for someone anxious like me?

Hello @NixWix and welcome hun!! So sorry you find yourself here but you are in good company and we are here to support each other on our journey's. Firstly congrats on your BFP yesterday, everything crossed for your next test!! With regards to the Pred fears I don't think there is a single lady who has seen Dr S or used the steriods who hasn't gone through the same worries/fears/dread/mental torment/anxiety's over the side effects. But what is reassuring is that people have been using this protocol for so many years and oddles of heathy babies have been born. You are in very good hands with Dr S and he will monitor everything and pick up on any anomalies. We kind of have to put our eggs in his basket and put our faith in it, and leave the science to the experts (I don't even think they know why exactly it works, but the success rates speak for themselves!). Hell I have resisted the steriods up until the point of getting a BFP line two days ago so have only just reluctantly started on the protocol. But I am doing it as I will only regret it and look back and say 'what if' if I didn't. If this one doesn't stick then it will be down to chromosomes or such like or perhaps a ropey old egg or sperm - but you dont have that worry with IVF . I guess in my warbling way I hope you will find comfort that you are not alone and everyone has had the same battles with the Pred protocol and making peace with it. I wouldn't worry about the 5mg difference at all!! It really isn't a high dose. I have a friend who has to take 500mg!!! (not for fertility and only in the short term). I am on the complex plan and will wean off at 12 weeks. I think that's the same for everyone. Re: Harming the fetus, there is so much that is unknown about what potentially could and couldn't harm the fetus but the fact that there aren't 100's of Dr S's previous patients up in arms about birth defects speaks absolute volumes!!! I think if anything it is our immune system and adrenals and bones that take the hit - but then a normal pregnancy could do that too without the steriods! Just be kind to yourself, eat well, exercise lightly and keep an eye on any side effects and report them back if you feel they are doing you harm. There are other options to the Pred.

Keep us posted how you get on!!

If you dont mind me asking, how come you decided on IVF this round? It sounds like you have a very switched on DR!? Where is he based? My Dr is unfortunately not a specialist in the fertility side but is very supportive of my journey with Dr S and is not overly concerned with the pred during pregnancy. I trust him implicitly so that gives me some comfort that he is on board with it too.

Big hugs x

Hello guys,

Welcome on board @LKM1 and @Nixwix and hearty congrats on the BFP....

@Nixwix - we understand the anxiety and we are all in the same boat. Hun, a logical thought, I don't think any Dr will introduce a protocol for making defective babies which is worse off than not having any. And i have only heard our pred seniors raving about it. You know, there is always a caveat (just in case)-this is how I see it. So keep positive, we are in safe hands.

@Sunshineblonde1, hope you are getting on well with the tiny bitter guys... Do you space them out through the day? I used to gobble it up on my run to work.. Ha ha...

Ooh.. You make me feel shy about the boink.. Lol..plus the coffee.. I couldn't stop laughing

And many many thanks for the tip. Will try it this cycle. And wondered if you use a keyboard to type your msgs¿?

Have a nice weekend you gals...

@HappyApple05 I love your logical voice of reason, really helps put things into perspective.

And I am only envious of your boink fest ! I have a vague memory of those times hehe! I am too tired for much after work and dinner most days grrr, hence we are mostly weekend bunnies! I think you will be safe doing it every other day as sperm do last and this will ensure the best swimmers climb Mount Everest .

Re: The Pred I have been chucking them down with my breakfast around 8AM. If i get problems sleeping I may eat them earlier. I take them in one foul swoop! I wasn't really told how to take them just that it needed to be with breakfast? I presumed all in one lol!!! What were you advised?

I interchange between the keyboard and phone depending on whether I am out and about.

Here is a biscuit to go with the coffee [coffee] .

Whoops the coffee emoji didn't work lol! Here we go

Hello ladies, I’m going to join in if that’s ok. I’m 41 and had recurrent miscarriages over the last three+ years trying to conceive number two. Had tests at local rmc and also went to Coventry where I was found to have complex uterine nkcells ie low on first biopsy and high on second. Been trying for 6 cycles since and just got my bfp yesterday. So I’ve started the cyclogest I got from prof Quenby and Brosens and been to gp today to collect the Prednisolone and lansoprazole to protect my stomach. My regime is going to be cyclogest 200mg day and night TIL 12 weeks and pred 20 mg til 10 weeks then down to 10mg one week then 5mg last week. As I’ve only just picked up the pred I’m going to hang on and take it first thing tomorrow. Fingers crossed for all of us. Xx