Immune/NK issues - aka Pred Thread no.20!

Awww Poppy... I'm very aware of the Zika sitch as I travel a lot for work and has to miss a number of trips to Asia because of it... luckily I have an understanding boss who didn't push it when I said, point blank, I'm not going!

I can't advise you... not sure anyone can! What a fucked up situation... is OH there right now? What does he say?

Hi all,

Again I've had no notifications for days so just tried to do a marathon catch up. I had the most crazy week with work, family stuff and long distance drama with DP (all sorted now) so I haven't been online much.

Congrats Amy! Lovely to see another BFP here. Welcome Bean and Soph; you've come to the right place/.

So I have discovered something infuriating. As you know, DP has been doing a lot of work in Africa for the past few years and this is integral to his work. Last night I found out that 2-3 of the countries he travels to (and I often visit him in) are now cat 2 or "moderate" Zika risk locations, which means the health advice is not to consider not going there or consider not conceiving for six months after returning and to use condoms for the same period of time. For us, this essentially means DP considers quitting his job (career in fact cos he's an Africa expert) or we consider never having a baby. Cat 2, moderate risk is distinct from cat 1, high risk which covers central and South America, plus the Caribbean where there are multiple live cases. The advice for those areas is stronger than "consider," it's "avoid,". Cat 2 includes countries that have had Zika cases prior to 2015. For example, Uganda which had one in 1947 and Nigeria which had one in 1954. Neither country (in fact none of the ones DP goes to) has had a confirmed case in recent years, whereas the USA has had several, but they are still cat 2. The advice is annoying because for the USA, the advice is state by state reflecting specific local risk, but for Africa it blacks out entire regions made up of multiple countries host to the mosquito that can carry Zika. My hunch is the advice is over cautious and very western focused, but obviously it's worrying me a lot. It's one thing saying, you are 50% likely to get Zika and a birth defect, it's another saying you have a theoretical risk of exposure. We can't make huge decisions like this on a theoretical risk. But it's another thing to fret about. The other side is that Zikaadvisers themselves counter this with advice that if you're over 35, waiting one year, for example, increases your rate of having a baby with Down Syndrome to the point it's potentially higher than the Zika risk. Rock and a hard place. I'm so frustrated!

Thanks for the warm welcome everyone :).
I've had 3MC 6.5weeks, 8.5weeks and 5weeks. Had all he usual testing- all fine. Tested postisitve for high Nk cells. Think I'm on the complex plan. Started pres last cycle but no joy. Think I'll be starting it again this cycle tomorrow/weds.
I too wasn't sure about the pred- I was born with a cleft lip so try a 25% chance of having a baby with one anyway. That being said, the care and options for cleft babies are amazing these days so it doesn't overly worry me. Plus the majority of people I meet couldn't even tell I had one. Friends of ours have been through lots of fertility treatments/ivf etc and we're too prescribed prednisolone. They were prescribed it at the NHS cycles through bourne and also privately in Greece. I also believe that there's so many safe drugs out there that can do so much good for all illnesses but lack of trials/funding etc means it takes years/decades for them to be liscencsed. I spoke to my accupuncture lady in length about it and she summed it up by saying how there's such a lack of trials in the pregnancy field because let's face it, who wants to take risks when they're desperate for a baby.
I'll be honest- I'm still super skeptical about the whole Mr Shehata thing. I've done the research about the nk cells and it's so mixed. I did ask him why the NHS didn't offer he no cell treatment but he said they did in surrey and I also looked and they're now trialling it in Warwick and Liverpool NHS hospitals. I felt like it's all a bit of a money spinner- my husband is more optimistic than I am but I'll give it a go. Also why fertility treatment isn't costly?! Anyway, thanks again ladies, and I wish you all well with your journeys xxx

Amy honestly, the side effects really aren't bad. I've had the odd spell of light headedness & an increased appetite, that is all. If you look at the potential side effects if any medicine they are all pretty awful. But the potential outcome of taking pred FAR outweighs any negative. The worst one for me was that there is a VERY slightly increased chance of cleft lip/palate but Mr S assured me that in all his patients he's never seen it.
I definitely think you need to make them aware of your dissatisfaction so far. If only to clear it from your head so you can move forward.
I have to say once you're actually pregnant, they're very good at getting your appointments I and emailing you the reports after each scan.
Just and I are also at the clinic on Wednesday, what time is your appointment? I'd call first thing tomorrow to let them know you're going to need intralipids - be warned it's 2hours and DH won't be able to sit with you while you're having the infusion.
If it makes you feel any better my GP has actually prescribed my pred this time round based on my succcesful pregnancy using the protocol last time.

Welcome Soph, hope you find this group as supportive and helpful as we all have. We're. A good bunch

Thanks Tee. I'm definitely leaning towards the pred and perhaps the mayo drip on Wednesday at the moment.

I hope your indigestion stays away!

Congratulations Amy! Wonderful news! Personally I'd be inclined to start the Pred and have an intralipid infusion on Wednesday when you go for the follow-up? I too have only had x2 MCs which the NHS wrote off as bad luck, but they missed my Hypothyroidism (can cause early MC) which Dr S spotted straight away. I had a couple of glitches with test results, but ultimately I believe his track record speaks for itself. I think psychologically taking the medication and having the support of the clinic could help you relax through the 1st trimester too?
Just yes I ensured I took the Omeprazole 30mins before brekkie and Pred after. Feeling lots better Harriet! Just a little delicate. Was defo indigestion. I'm glad it happened in a way because I'm now totally motivated to eat like a goddess this cycle! Stocked up on lots of healthy things to eat. Takeaways banned for a month!
Snoopy how lovely!! Fabulous name ❤️

Thanks for sharing that, Seeking. I suppose I would have been a little less skeptical if the NHS had prescribed the pred... And perhaps if I'd had a smooth run and a good experience at the clinic too. I think you're right about outlining the issues in an email, my other half suggested the same thing. I've got a follow-up appointment booked for Wed, but that seems so far away!!

The long laundry list of pred side effects is the thing that scares me most. But if you can all cope so well, I should just suck it up! I really don't wanna lose this one if there's something I can do / take to help stick that bean.

Welcome to a most fabulous, supportive group Soph. What's your history? How long have you been taking the pred? X

HI Soph! Welcome!!! What's your sitch with Dr S? 🙌🙌💪

Hi ladies, I just stumbled across this thread on google. So I've just joined mumsnet to be able to chat with you all. We started seeing Dr Shehata 3 months or so ago. It's nice to find an up to date group of ladies who see him. X

After my second mc I was also told it's just bad luck... but I went on the have a third and new it was crap. The truth is they have to say that because they can't offer you any testing until 3. That's my opinion anyway.

What is that scares you about taking them?

Congrats Amy, great news!!
I can only echo what Harriet said in that I think you've just been really unfortunate with the catalogue of errors that have landed at your feet. I would definitely send them an email outlining your concerns regarding that.
Also - the decision is obviously down to you and DH, but I think what you have to weigh up is how you'd feel if you lost this pregnancy without having tried. If you feel you're willing to try it then I think just try the blood thinners.
Re: starting pred late... I did take them post ovulation this cycle but I didn't have enough tabs so my dosage wasn't correct. My 4th mc I started pred at bfp but lost it at 8+6 down to a chromosome fault. I firmly believe I'd have been ok if I hadn't had the chromosome issue.
I know the drugs seem scary but there is a lot of evidence it works, both with Mr Shehatas office and other private clinics. Would you still feel unsure if it had been prescribed by the NHS?

Harriet - maxi dress is the way forward!!

Luna - my other half has been quite skeptical of the pred and our bad luck experiences with Dr S to date, but is totally supportive and is leaving the decision to me. Blessing and a curse, because I kinda don't feel like I'm qualified to make this decision by myself... I don't even trust myself!!

My NHS doc said that my 2 early miscarriages (both at 6/7 ish weeks) are fairly normal, so if I hadn't paid for the tests & investigations I may just have continued into a 3rd pregnancy without worrying so much. And would have been none the wiser to any issues.

But now that I have done the tests, how can I justifiably ignore the advice!? What a mess I've made for myself, huh!?

Ah! Thanks Harriet and Luna! Hard to get excited though at this point, isn't it?

Amy! Congrats!!!! Terrific news!!! Harriet is right, we've got successes starting Pred late and not at all! So it's a totally personal choice... You are still an earth mother with the drugs, I think it's just cause they feel so experimental and sever that we panic... but there's no denying they do work, and for some it's the only way - for others, and maybe you, they might not be necessary... what goes your OH say?

Hi ladies,

I'm sitting in bed staring at a big FAT positive test, slightly terrified.

When I last posted, you might remember I was vowing to go full earth mamma and try and find some courage for a 3rd go at a natural pregnancy (with help from some blood thinners) before diving into the pred.

Over these past 2 or 3 weeks my courage has waned, however! I booked in with Dr S again to get the drugs lined up for next month, but they told me the wrong clinic location over email, so I missed my appointment last Friday. It's another notch on the board of bad experiences with his clinic and lost / missed / changed results, to be honest.

I just want to be able to trust someone enough to tell me what the right treatment / answer is.

I had pinned my approach on the idea that my previous losses could have been caused by my blood clotting issue only. I'm still a little dubious about the NK cell diagnosis even though there seems to be so much success for everyone here... But now that I'm pregnant, I'm absolutely terrified I'm going to lose another if I don't take the Pred :(. But maybe it's too late to start taking it properly anyway!?

Argh. Any ideas / advice / opinions from you ladies are much appreciated.

BTW - I've been keeping up with all your the stories in the background, finding your experiences SO useful to read. Such a great community. Much love to you all and your moonfaces ❤️🌝

Morning! Maxi dress camouflage today harriet! They'll just think you put on a few pounds, and be far too polite to mention it lol!

UTI is getting better; still get that dropping sensation at the end of a pee and a slight temperature, but much better!

Day 7 of Pred and I've woken up feeling really jittery and a bit mental! Not sure how I'll be after 4+ months of this stuff - will I even be married still!?😱😱😱

Anyway - going to dump DS and puppy on DH and get some much needed time to myself this afternoon, I forget to take care of myself!

Enjoy the summer everyone, finally!

Oh that sucks Tee, are you taking omeprazole before breakfast and pred straight after?
I had withdrawals after my first 9 day cycle on pred, just a lethargic fluey type reaction but no indigestion until later in pregnancy. Maybe some of us are just a bit more sensitive to it.
I'm tapering off pred now, this is Day 5 and I'm über emo. I don't think the majority of pred-ers get as strong effects though so don't let my experiences worry anyone, I'm a feeble weeble.

Snoopy how wonderful! That's a stage for us all to really look forward to and fight for. Congratulations, now you can forget all about it and enjoy a lovely life with your fam ⭐️⭐️⭐️

I keep thinking about how I want 2! Lol, gotta get through this sh*t fight first but can't help daydreaming about a cutie family of 4. Of course, I'd feel blessed with just one beautiful bub but you have to daydream 😊

xxx

WOW has it been 3 weeks Snoopy! And I ❤️ the name Ines, it's on my list too!

I always wanted 3... but I can't imagine that; I can barely imagine getting this one at the mo!

Give that wee baby a kiss on the head, filled with all the warmth and love of all the mothers in waiting out there ☺️

Ahhh Ines is a beautiful name snoopy! So glad you're all doing well! Weanie beanie! Haha!
How funny that she popped out with her fist I for the of her... back off NK cells!!

I already think I'm not sure I want to stop at 2 but equally I know I don't want to go through all this rigmarole again. We are so lucky to have one miracle (and you now 2!), I still haven't quite accepted that I'm pregnant with number 2 and yet I'm here thinking about more future babies! Bloody insane!

Hello everyone. So glad to see so many bfps and positive scans! I just wish the treatment was more widely available.

Baby is three weeks old today. We decided to call her Ines (pronounced in-es, it's Spanish). She's starting to look like her big sister but she has dark hair instead of light blonde, she is much longer and skinnier and she has the most pitiful little cry imaginable. So I've nicknamed her 'weenie beanie'.

I can't believe the whole ttc/miscarriage/pregnancy saga is over. I feel a bit sad I'll probably never be pregnant again but I'm so grateful for my two little girls. I especially can't believe that after the drama of my first successful pregnancy I had a successful 'accidental' one, but Ines must be a fighter because she came out with her fist in front of her face haha

DH has had all sorts of stupid hair dos, currently he's sporting silver hair! Haha!
I love seeing little boys with a mop of hair, it's so cute!!

Sorry you're feeling crap tee, hope you wake up feeling better! Definitely worth asking DrS about it, especially if it continues. Hopefully it just a one off.

Oh dear tee, nightmare!!! You poor thing! Thought you'd managed to skip all Pred symptoms; damn!!

And I would be the same, after a BFN, AF is just what you want, on time, and things on the cycle staying tidy! But still a wee stab in the heart I know 😞

My DS is a blonde mop too too 💓 Like a cherub