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!

Seeking really sorry to hear this, must be terribly worrying. We all think the worst at times like this, self preservation... but this happened to a lady in another thread I was on, she was a whole week behind and everything turned out just fine in the end. Hope you can relax a bit while you wait.
Harriet Dr S has said he wants my level below 2.5, and sent me a prescription for 50mcg. Thanks for your encouragement, definitely going for it in August cycle!! x

Seeking 🤞❤️ Everything is crossed for you...

Seeking really hope everything is ok!

Thanks for the kind word ladies, yes will find out more on Thursday.

Was going to say tee- am sure for Thyroid they like it under 2.5

Exciting about your trip poppy!

Hope you're managing to semi avoid symptom spotting Harriet- not long till you can test though -fx x

Oh seeking, I'm sorry to hear your scan wasn't s positive as you hoped. My first scan with Dr s put me a week behind my dates (and we only DTD once that month so I could tell him dates) and at pretty much every scan he put me behind. However my nhs scan at 12 weejs was pretty much bang on.

seeking just to say, I had a similar thing with my last mmc where my 7 week scan showed a 5+2ish pregnancy (yolk sac but no fetal pole, I was sure of my dates). Obviously it ended badly for me (I wasn't on treatment, there was no embryo and the date disparity was much worse) but in the horrible waiting time I did so much googling and found so so many stories where people were behind at an early stage and it just caught up. For most normal people they don't have a scan until 12 weeks so would just never have known. One of my friends has had her due date pushed back at every scan. Hope you are feeling ok?

Right, update time. I'm in super Google mode.

Finally booked a flight to meet DP and getting in tomorrow evening.

Wake up this morning, get a bloody positive OPK! Argh! One day early according to last cycle! No warning, no flashing smileys to indicate oestrogen rise, which I normally get for several days beforehand, they've been negative since Sat. This means I'm ovulating in the next 24-36 hours and then I have 24 hours of the egg being there. FFS. If I O in 36 hours it's perfect, but if I do in 24 it's going to be tight. Apparently sperm needs to "capacitate " for up to 9 hours after sex? So basically I may miss the window this month. However, at least I'm on with a shot which is an improvement on my initial expectations for this month. Anyone have any thoughts on this and know about this mystical capacitation process?!

Hope you're all holding up ok. Any updates?x

Hi poppy fantastic news on your trip! Frustrating about the opk though! I'm pretty sure the LH surge can sometimes take place 48 hours later, which should give you extra time? Also I have no idea about this capacitation process - was trying to find out myself this cycle. There's so much conflicting stuff about it online. Ultimately you can only do what you can, so if I were you I would get shagging as soon as you arrive and then again the next morning for good measure! Good luck!

7dpo today and having what feels like ovulation pain which is slightly concerning as this is the day I would normally ovulate if I hadn't had the stimulated cycle! We will see.

Hope everyone is well, especially seeking

Thanks Harriet for the encouragement! Yes I'm super excited but wish I could just have one more day before O. Having said that last month we went heavy on sex in the run up and supposed day of and nothing happened. If I am at the later end of the 36 hour window I could have missed it!

You're right there's so much rubbish online. Even read today that if you catch the egg at the end of its 24 hour life you are more likely to MC. So why do they say we have a 24 hour window then?!

Rogue O pain sounds positive! I have had it after the expected O time in both pregnant and non pregnant cycles. It could be the corpus luteum. Fingers crossed! You can test in a few days!

Poppy my strategy in the past has always been to DTD loads in the run up to ov, often missing ov day itself, and certainly after (DH loses enthusiasm by this point!). It's not done me any favours this far! Both my friends got pregnant recently by just DTD once at ovulation. I also read that in IUI they deposit the sperm 48 hours after a peak OPK reading?! I'd been programmed to think that is way too late. Yes it's a shame you can't DTD today to cover all bases, but I think you've got a great shot, as Harriet said, you might want to jump DH pretty sharpish!!

Thank you Tee! DP is picking me up from the airport tomorrow evening and will probably ask if I want to go home and change before dinner. I think I will take advtange of that! We haven't seen each other for a couple of weeks so he's definitely on form.

I'm also hoping that seeing as I had a negative OPK yesterday and no flashing smiley indicating high fertility, I may have caught the very beginnng of my LH surge, meaning it may be that O happens towards the end of the 24-36 hour window!

I'd definitely be inclined to think the same in terms of catching the beginning of your surge! Will you test tomorrow to see how things are looking then? Be great to still see a strong line then. Drink lots of water today and tomorrow to get that EWCM as plentiful as possible x

Another day, another effing pregnancy announcement on Facebook! These moments are like knives in your brain aren't they!

Haha, Luna, my colleague's wife had a baby on Saturday and my other business contact's wife had one today! But you know what, they're not our babies and it doesn't change our prospects. I am determined to stay happy for others, however much I wish it was me. I find it makes me feel better than if I allo myself to get annoyed/upset (which I have done lots of in the past!)x

Yeah I know; you're right... think I've used up my nice chips this week 😝

Tee, thanks for that tip. I am still getting a lot of ewcm so fingers crossed my body is taking its time!

Luna, yeah it can be certainly inflate one's disappointment!

Hi everyone,

New (possible) pred thread patient over here, seeking advice about whether to proceed.

Firstly thanks for sharing all your stories - especially harrietm87, tee4me, Starshine1, LunaB, PoppyJ1, JustLa, Seekingmiracles and everyone else. So glad to find this thread. Nice to meet you all and sorry for your troubles

I'm 36, I've had 2 mcs both at ~7 weeks in the past 9 months.

Rather than going through another mc, I booked myself in with Dr S and just had my diagnosis on Monday. Due to a high count / aggressive NK Cells, I've been recommended to follow the Complex NK Cell treatment plan with Prednisolone.

I'm so freakin' scared of the side effects, wondering if it's the right choice, wondering if it's worth the money... and feeling really low about the general ttc journey thus far. ALL the feels.

Looking for some positive and/or worts-and-all stories and to connect with people going through the same thing.

Are the steroid side effects super awful or manageable? Is anyone regretting the treatment decision, or are you feeling hopeful? How many cycles / what kind of money have people spent to date on treatments? (They haven't fully costed out my treatment plan yet)

Thanks

Hi Amy,

Welcome to this awesome thread. Sorry for your losses. You have come to the right place and I think you've made a good decision investigating now to avoid another MC.

Pred has a number of annoying side effects like weight gain, disruptions to cycles and pregnancy like symptoms (sore breasts, nausea, etc) that can be super confusing. I've heard the weight gain is linked to salt intake which can be countered by potassium. I've been reducing salt and eating lot of bananas and I do believe it has helped keep my weight down more than the last time I took it for something else.

DP and decided to try again from April after taking a break following my second MC in January. The first two months on Pred (started in March to let it kick in) I had ridiculous cycles and had two bleeds in one month and no indication of ovulation for two months! My doc said it can take a few weeks to settle in. I've been ovulating again for three cycles but so far I've only managed to pin down my DP at the optimum time once, due to his business travel schedule. Last month we had sex all week and I didn't get pregnant, which enraged me because in my two pregnancies that ended in miscarriage I got pregnant with just one shot each time! Since my MCs may luteal phase has shortened to 11 days compared with 12+ previously, so my doc has asked me to get a progesterone test 6 days after O to check whether that's preventing conception.

As ever, looking forward to some BFPs and 12 week scan pics!

Thanks for the warm welcome, Poppy. I know how you must feel with timing - it's hard to get it right even when one or both of you are not travelling! I have a similar issue with my own work schedule. You'll nail it this month, surely :)

BTW everyone, I found a fabulous, balanced article on immunotherapy from 2016, earlier this eve. Perhaps you've all stumbled across it before, but it felt super honest and strangely hopeful to me: www.theguardian.com/society/2016/nov/12/can-mayonnaise-cure-infertility

Hi amy and welcome. Sorry for your losses.

I've had 3 early mcs - 2 natural and the last missed, most recently April this year. I had my tests done in May, found high NK cells and thyroid antibodies, then June was my first cycle on pred and now on second. Like poppy I've conceived first time each time except for last cycle.

The pred makes me really hungry and I've definitely put on weight, but that's the only side effect I've had so far.

poppy I didn't know that about the salt/potassium- good tip!

Poppy tomorrow?! How exciting, wish you could post pics in here. The O day sounds super promising, remember (gonna get graphic again) lube and doggy style helps if you feel you're getting a UTI! 🙌🏼 Lol

Luna I understand, it's been so effortless for most of my friends. They got to have glorious exciting relaxing pregnancies, they got to take tests and say 'we're having a baby!' It's exhausting!

How are you doing Tee? I got preggy this time doing it once on ovu day and once the day after, while on holiday- you may be onto something.

Amy, a warm welcome to you! Will answer in my next post so it's not one huge epic novel.

Hope everyone else is doing ok?
And thinking of you a lot Seeking, sending love and hope xxx

Great tip on the bananas, Poppy! Thx ⭐️

Amy, sorry you've been through some nasty stuff too, you've done the best possible thing though as you've been diagnosed with a treatable reason for your losses. I know it can be overwhelming, but I personally think that's a great result. It's a condition that only affects you when preggy I believe so hopefully the plan will work and there won't be any other complications for you 🌈

I don't regret the treatment for a single second. I've had 1 chemical MC at 5.5 weeks and 2 MMC completed at around 11.5 and 10 weeks. Both stopped developing at around 6-7 weeks.
I've got high Nk plus antiphospholipid (sticky blood) at a high to very high level. I'm taking prednisolone, Cyclogest (progesterone pessaries), intralipid once a month, aspirin and I inject myself daily with heparin, a burny bruisy blood thinner. I have to take that up until 6 weeks beyond birth (fingers crossed).
As far as the Prednisolone goes, the worst effect I've had was a bit of feverish withdrawal after being on it for 10 days for ovulation. I've now been on it solid for 4.5 weeks as am 8+2 pregnant and a bit of a state. The combo of my meds has made me super emo, sensitive, massively bloated (I honestly look 4 months preg) I have moon face coming into play, which at 38 years old, I'm ok with as it's kinda like Botox. Huge acne on chest, large bruises and random bleeding from injection sites, but I'm sleeping ok. I'm not experiencing any horrendous symptoms from pred, it actually helps with morning sickness which is nice in a way but when a little sickness breaks through, it's comforting.
Also, as Poppy mentioned too, my boobs aren't burning or very swollen, so it's affected that too.
I had a problem with the intralipids but it was very rare. My first vein collapsed, so they put in other arm and that blew up like bonfire night so they had to stop it early. But all the other girls sat in room had no issues and it was nice to chat to them all.
In summary, the most difficult thing to get through is the constant feeling of impending doom and very high emotions. The rest is fine :)

Honestly, I think you've done the best thing- you'll almost certainly eliminate a pregnancy ending from your natural killer cells by taking the pred and having intralipids, so it should be just the normal problems you have to worry about after that.

Sorry for garbling on!
Xx

Welcome Amy! I'm in a very similar boat to you, got my diagnosis last Thursday after x2 MCs within the last 19months, high level of activated NK cells and positive result for Antinuclear Antibodies. Been given the complex plan too, pred for 10 days from ov, then take pg test and go in for intralipid infusions at 4, 8 and 12 weeks when positive, along with cyclogist pessaries.

I know the infusions are £300 a pop, so that'll be £900, and I think scans are also £300 and it sounds like he performs those at 6, 8, 10, 12, 16 & 20 weeks?

I've also been advised to take Thyroxine because my TSH came back a little high.

AF due at the weekend (we were banned from trying this month), then hoping to kick off with the plan around 11th August. Where are you in your cycle at the moment?

Wow thanks everyone, especially @JustLa for the detailed experience notes. I really appreciate it.

It's not like we've got 'one of those things' that everyone goes through. You can't call your best friend and ask "what did you do?" Thank goodness for people sharing on the internet!

I think I can handle moonfaces and the cravings if you strong ladies can... :) but I'm usually a personal who opts for the natural path, avoiding even paracetamol unless pain is super super bad! It's a very hard decision for me. Especially knowing that the treatment may not work and a natural birth may still be possible.

It brings we so much hope to hear about people getting pregnant or already pregnant on here though. So keep those stories coming!

All the love and luck to you all x

Ah, perhaps we'll be treatment buddies then, @Tee4me!
I'm waiting for AF this weekend too!

Thanks for the cost info, we can pay for it, but it's definitely a factor that is on my mind... as well as the rest of the emo stuff!