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

Good luck for today Star!! ⭐️ Let us know how you get on and I'm sure it won't be as bad as you're expecting xx

Seeking I agree with the others- you look beautiful in the article and if you had a moon face earlier on, it had def gone by then

Oh you're all very kind, but I def had a fat face... it had calmed down a bit by that point though. Weeks 8-14 were very moony! Lol!

Tee the pred won't trick your body into keeping hold of the pregnancy if it's not meant to be. Cyclogest can possibly by keeping your progesterone levels up, but generally most people who are going to miscarry will do so regardless. Hope that helps.
Can't answer your other question as I paid privately the whole way through, not heard of many insurance policies that cover it either.

Hi all,

Sorry have been on a frenzied google mn infertility search! Have convinced myself that tomorrow will get the bad news, that actually the miscarriages are also due to my egg quality and that here is very little chance of us getting pregnant again, let alone not miscarrying. I know I should wait for tomorrow's scan- but there is too much information at our finger tips now.

Poppy- how exciting about your trip! Have a wonderful time! Enjoy and I think it's sounds like you'll just get in there for your FW.

Harriet- so close to testing for you! Hope you're holding out ok.

Glad you're doing ok justla, I think being emotional and pregnant after miscarriages is completely normal.

Welcome Amy- lots of the ladies have already given you good advice- at research into ivf and donar eggs (have gone nuts over drive) I think other countries are also testing for nk cells a lot more readily than the uk. Also the dose of steroids is very small and as the others have said their are side effects, but quite a few minor, reversible ones.

Seeking, I am glad you're getting on ok, well as well as you can be at the moment. Have my fingers crossed for you.

Tee- our private health cover doesn't cover for this and in terms of the first question- I believe the treatment can prolong a miscarriage- particularly the cyclogest (which is why lots of centres don't use it- pros and cons for it)- but i am pretty certain that if their was something wrong with the foetus mc would still occur in the first trimester.

Sleep well all

Couple of quick questions that have been circulating in my brain, and wonder if anyone has any insight or thought to ask Dr S?:

1. I understand taking the steroids means our bodies are less likely to attack/terminate pregnancies. Obviously in some cases our bodies do this because the pregnancy is not fully viable or there are genetic issues. This plan doesn't trick our bodies in 'keeping' pregnancies in error does it? God, sorry that's a bit of a morbid question 🙈 It's just I'm realistic that sometimes MCs are natures way of sorting this stuff out, and I'm conscious we are interfering in that process. I wish I'd have asked Dr S about this, I'm sure he would have a reassuring answer!

2. Did anyone start off paying privately, then once diagnosed switch to private health cover?

Seeking, I'm so happy you're feeling ok.
You're absolutely right, we have all learned to expect the worst #PregnancyCatastrophists!

That was a great article and you look so beautiful in your stripy dress.

Roll on Tuesday so you can see what's going on, I have everything crossed for you! Xxx

I'm off to to sob over Davinas 'Long lost family' show because, well- sobbing and being over emotional is one of my fave hobbies at the mo!

Xxx

Seeking! How funny that's you, what beautiful bump! Your face doesn't look very moony to me 😆 You look utterly radiant x

Amy I know what you mean about not taking meds. I never take pain killers and I'm still eating organic foods where possible, using hippy deodorant and plant based cleaning products.... then pumping myself full of these chemicals 😂 but it's tried and tested so have to put faith in Mr S's success rates.

Forgot to mention, physically I'm not very robust, allergic to many things, bruise, burn and am sensitive to side effects generally so I think you will be totally fine
Xxx

Hi ladies!!
I'm feeling surprisingly ok about things today. I know it is very early to have seen a heartbeat but I keep thinking back to my last two pregnancies when we saw one at 5+4. Any way this pregnancy is different. We'll see how it goes. I've read so many stories over the years, I know it could still turn out ok, but I think after our losses we're programmed to think the worst and prepare for it.

Hope you manage to jump DH in time poppy!! Fingers crossed!
I spent months before doing the Sperm meets egg plan and failing to get pregnant. This pregnancy and last we dtd on day of positive opk and day after.

Amy welcome to this wonderful group. I think you're definitely on the right path. Try not to worry too much about the side effects, they're all worth it in the end.
I was very lucky in that the steroids didn't effect me too much, just gave me moon face and insatiable hunger! They can also mask symptoms so don't worry if you don't have nausea/sore boobs, I didn't with my successful pregnancy and as yet I don't with this questionable one.
That article actually features me .... I'm the fat preggo one in the stripy dress! The lady who wrote it was also a patient of Dr S and (hopefully) has had her twins by now!

I think we spent about 5k with tests and treatment and a loss on plan when ttc Tallulah.
Consultation and scan is £250, done every two weeks, steroids are about £40 I think, intralipids £300. It can all add up quite quickly. But again... so worth it.

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!

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

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?

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

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

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,

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!

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

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!

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

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

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

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

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!