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

[harrietm87]

Hi all, thought I'd get the ball rolling on the new thread.

Welcome all with immune/natural killer cell issues.

It's been a while since a new thread so thought it might be helpful if we all added our stats:

I'm harriet, age 30, TTC#1.
3 mcs (2 at 5 weeks, 1 mmc at 9 weeks).
Hypothyroid and high NK cells.
Cycle 2 on pred!

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?

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

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

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

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

I hope your indigestion stays away!

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 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

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!

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?

Thanks, Luna. Well OH is a brash Australian and generally thinks most health scares are rubbish and that I'm being paranoid. The Aussie advice has all the relevant African countries down as "low risk" and parts of the USA as high risk. The USA has parts of Australia down as "high risk." So it is reassuring on one level but adds to the confusion. We have agreed to avoid high risk areas already and have done since starting TTC. But we didn't expect all these other countries to be categorised as moderate, according to most western travel advisers.

I guess it boils down to risk and termination options - you have a chance to terminate a downs baby 'early' on if that's what you want, is that the same for Zika? I think maybe not? Plus many people chose to have down babies, but a micro baby is a whole different story.

With a moderate/low risk, that OH can help with by taking all the precautions re bites, plus the chance to test and terminate early if necessary, I would probably go for it - or, OH takes a sabbatical?

Ha, yes I'm well aware of the Aussies- my mum 1/2 Oz 😝😝

You can get Zika testing via amnio and termination is often recommended. I would in that case because the microcephalic babies do suffer. What a terrible predicament.

Yeah I think it's down to our individual risk. DP doesn't get bitten much and even I don't when I visit him. Also, we stay in nice places where Zika is less prevalent. The thing that sticks in my mind is the categorisation. Moderate risk includes historical cases and potential for new ones and the countries we go to have the mosquitoes and have had confirmed cases "since 1980" we doesn't tell us much. I have one short upcoming trip planned to one of these places just after my next fertile window. The last documented case was in the 1940s, so I would feel a bit silly cancelling, especially as the main risk is DP cos the virus lives longer in sperm and he's out there a lot.

By documented I mean last dated case. Meaning this place could have had nothing since the 40s, but the presence os the mosquito would categorise it with places that had more recent occurrences. So annoying.

Oh Poppy, so sorry about the Zika sitch. Whatever happens, you have to be the one comfortable with the choice you make. If it were me, I'd probably find out about early testing / termination options and then go for it... but I guess it's hard to say for sure what you'd do until you're in that situation :(.

Soph - amazing what they can do with the cleft surgery these days. It's reassuring to hear your take on it and your choice to proceed anyway. From one skeptical femme to another, I'm slowly coming round to the idea that we need to put ourselves in Mr S's hands and hope for the best. Good luck this cycle! X

P.s. I'm Aussie (though I've lived in London a LONG time), I promise we're not all brash! Though I have been doubting my diagnosis, so who can tell ;)

Seeking - my appointment is at 2pm. How about you? I'll try and ring on Tuesday to get the mayo lined up, great idea!

Thanks, Soph! We are going to try to get DP tested now for next time and then be super careful on our trip during the two week wait. I would not be going to South America under these circumstances but I do suspect that poor old Africa is being lumped in a bit generally, as tends to happen.

Lol, I know, I am getting very fond of Aussies I have to say. DP is brash but a diamond with it and that's what counts! Either way I do think Australian health provision and research is excellent (often better than UK) and less tied up with big US pharma, so I am encouraged by the slightly less scary risk assessment.

Sorry, thanks Amy! I saw your note to Soph and got mixed up.

Hi everyone, quickly catching up!

Love the name ines snoopy! Hope you're enjoying being a family of 4 like you, after all the issues with getting pregnant with DC 1, I can't believe I'm nearly there with 'accidental' baby no 2.

Amy - just wanted to say for various and differing reasons both my pregnancies under Mr s I've started taking pred at BFP rather than from ovulation.

Poppy - sounds like you found a good one :) and totes agree that South America is a whole other level.

Sunny - ah thanks for mentioning that. Did Mr S warn you it might be too late / risky when you started taking pred at BFP?

Oh Poppy, what a predicament to be in. And a confusing one. I think I would go with early testing and the possibility of termination. The risk does seem fairly small and if DH can be as careful as he can be in terms of preventing bites I think you'll be ok.
I know someone actually who has recently had to have a Zika test in early pregnancy and all was fine.

Amy, I'm there at 3.30pm, you may bump into just she's there at 2.30 and having intralipids too so you could both be in the room at the same time. I personally think you should trust the plan you've been put on. It's not a 100% guarantee, I don't think that exists but it will definitely give you a fighting start.

Wow, Seeking. Do you know if the woman got a zika test for herself or for the baby? Thanks for the info, there is no detailed advice out there!

Love this idea that Mumsnetters can be bumping into each other in clinics!

I'll see if I can find out, she's from an old Mumsnet thread I was on years ago so not someone I see Or hear from regularly.

Poppy, just gone back through the thread. Her and her DH had the tests done.