Immune / natural killer cell treatment when ttc or pregnant (aka the 15th pred thread)

[sunnyday01]

This is a thread for those diagnosed with high or very high natural killer cells and trying to concieve or are pregnant and taking steroids/intralipids etc

Newcomers very welcome

Hiya Drttc. I don't have mine, I will get them when I see him next but I checked my old ones (which were lower last May after 2 mcs (jan and April) . I have 21% circled in my note. All I know is now its gone to 35%. Like you I've investigated a lot!! I only wish I could fine something I could do to bring it down without steroids!?!?!

Sunny did you get retested? Just wondering why I am being retested and then Tri tested!?! I could pay for flippin ivig which the retest costs!!
Also I didn't get told about NK numbers on the phone so must be more of an issue with the cytotoxicity?!?

Sorry got it wrong above, he said it was the activation and the cytoxicity that were relevant.

Anyway my results were:

Total nk cell count - 651 (ideally less than 200)

Activation - total nkcd69 count - 1.06

Cytotoxicity

50:1 38% ( less than 20% ideal)
25:1 26%
12.5:1 - 15%

My treatment is 25mg pred, intralipids at 4,8,12 16 weeks and now hydroxy

No I didn't get retested and no suggestion if it either

Thanks, sunny! Ah so is your cytotoxic the number he circled? 30% is was I have circled on that page.... But I also think what counts is how much the meds can reduce it!

Determined, if the circles number is the cytotoxicity then a jump from 21 to 35% does seem quite a leap!! I'm not sure I'd pay to get retested with Dr S.... I'd try Dr Quenby if Dr S wasn't able to figure things out.

Ah just seem your latest post, sunny. Very interesting. Did you react well to the meds in the blood test?

Ignore my typos ladies :( I swear I speak English!!

Such a minefield all this!! I could have got some it wrong but yeah something like that!!

Just out of interest why Dr Q? Have you experience?

Hello!

Determined remind urself all this stuff Mr s does is very experimental and he's one of the few in uk to do it. No one realllyyyyyyyy knows, and the stats are on ur side that next time u will be ok even with no treatment...so although we want his expertise and his advice don't feel like it's all over (easy to say) as he doesn't know for sure as there's such minimal research in the area.

I don't know if that makes any sense!

Dr quenby only uses steriods. No intralipds etc. And she does a uterine scrape to diagnose high NK cells. A lot of women on the Rec Mis thread have had luck with her..(but in the past Mr s patients have as well!).the only other things she's does is clexane post 6 weeks and progesterone day 21-it's meant to help the uterus reject bad embryos or something. But again...it's all experimental!

Determined - so sorry your results were worse. I can really imagine how you re feeling rock bottom but please don t lose hope. There s still stuff thats not fully understood and levels are said to change. Could there be anything else that could help outside of drugs ? Acu is good for LP defects. Also i read an interesting book on a doc that developed very debiltating MS who pretty much got back to normal func thru dietry change. Since our issues are thought to be a type of autoimmunity (as MS is an autoimmune dis) my acu lady suggested i read. Its basically loads of veg, organic meat/fish, no gluten or diary (paleo diet). The book is: Wahls Protocol, The : A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles. Its just a thought. Anyway sending a virtual hug, this journey really is so hard sometimes.

Sunny - sorry on the bfn. It never gets easier seeing that one line.

Lillies - hope you re ok. Thinking of you.

Ahh you guys are so lovely! Don't know what I would do without the board! I think it's just been the combo of everything Nd feeling ill all week I'm just not coping! I'll be back to it in when I get my energy levels back I'm sure.

Thanks for the extra info trying/drttc

Ah thanks hula, just started with a new acu as mine is on mat leave! Hope that helps. Also I have cut out gluten (had the odd slip up when on holiday/mc 4) and was advised to cut out diary by a nutritionist. I will deffo check out that book though so thank you!

Hope you guys are doing ok ?xxx

That's wot we r here for. We are all on this shitty journey together...

I had a look at my results and the pred and intralipds seem to drop my nk cells by 40-50 percent. If only I could get preg to see if it works!

I'm here! Sorry, been out literally all day. Just got in.
Well, I don't know if I ever been so surprised and speechless - they found a heartbeat!!!! It had grown and developed a heartbeat! I can't believe it. I really can't. In no way out of any woods yet but a good step today.
!!!!!!!!!!'!!!!!!!!!!!!!!!!!!!!
My dates to measurement dates are in no way matching but the doctor stressed in no way was I to be concerned about that as everything is so small plus I've a tilted uterus which was hard to get around plus the bean was lying awkwardly to measure. So trying to remember those words and not find something to worry about out of it.

Ok, off to catch up with today's posts......

Thanks so much for all your words xxx

Wow! That's amazing lillies! So so please for you xxx

Fantastic news Lillies! Keep thinking positive

Drttc - my medication response results were

Ivig 12.5 13%
Ivig 6.25 19%
Pred 10 - 15%
Pred 5 -23%
Intralipid 3 - 17%
Intralipid 1 - 23%

So in theory a pretty good response. Like trying says it's still early days with this treatment although good results have been seen, I guess there will always be a bit if trial and error.

Lillies that's amaxing, Now u can chillax (a little!) xxx

Still have brown when wiping so won't be relaxing anytime soon but got to have faith! X

Yes! keep thinking postive...a heartbeat is always a great sign...So many women spot in pregnancy and all turns out ok. When is ur next scan? Try relax (if u can!).

Thanks trying, I'm seeing mr S on Wednesday so will be having a scan and consultation then. Found out they've now stopped doing the drips at Wimbledon, now using health care at home, so all being well then intripalids at home by the end of the week. Spoken to the office today to get the ball rolling, although they weren't confident of h@h cancellation/refund procedures if bad news. Will be asking them when they ring to arrange.
I'm hoping mr s equipment will be better and will be able to measure me more accurately to my dates so I can stop that worry!

Yes Mr s will def give u that reassurance. He does it all day so sure ur dates will match up. Even a mm here or there makes huge diff at this time...so keep holding onto fact that ur bean is growing and stay postuve
X

I'm so pleased fir your Lillie's, know it's early days still but it's looking good at the moment x

Wonder why they stopped using wimbledon, was ok there when I went (although I was just put in a random room with no place for OH to sit etc)

Here's hoping mr s is the man with the answers again!
Sunny - they just said that Wimbledon couldn't keep up with supply demand, I think h@h is going to cheaper £280. Can't be long before the new clinic is open?

X

Hey everyone, how's your weekend going? No news here, still lots of brown on wiping. Trying to stay positive after Thursdays surprise but it's just so hard. I'm worrying, waiting,wiping, driving myself crazy. Trying to distract myself but when you can feel what's happening below my mind instantly races, I'm finding it impossible to forget what's happening. I'm sure I'd be better better if it wasn't for wiping brown all the time, studying it for any changes!
Off to see mr s Wednesday. Think it's the new clinic, clock house clinic. We have to leave the house at 6am!
X

Glad you're doing well Lillies! I'm sure Mr S will be able to enlighten you on Wednesday. Yikes to the leaving the house at 6am though!

I'm a bit nervous about ttc! Things have just been so great lately and we're about to go on a long holiday (nearly three weeks long) to Asia... I don't want anything to rock the boat! But if we don't try we certainly won't get where we want to be... So will just need to hope for the best. I've been looking up the hashtag #rainbowbaby on Instagram to help me think positive :) So many sad stories on there too though!

You're right, we've got to go through it to get where we want. Our third baby isn't going to get here without all this. We do have to go through it. I found it scary starting to ttc, then scary that we hadn't fallen pregnant quickly as usual, and now we are pregnant I'm terrified! Seriously terrified.
But, this is what we have to do, this little bean is fighting and so I am fighting, whatever happens. We've been through hell of a lot to get our kids, and I did get through it. If something awful does happen, then it'll be horrific but I will get through it. I have so much to keep going for.

We will get through this part and achieve our dreams.

Still spotting the brown, seeing mr s Wednesday, intripalids at home Thursday if all well x