Immune /natural killer cell treatment when ttc or pregnant (aka the 17th pred thread!)

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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

drttc that's amazing! Doggy cuddles are so good, my little furry buddies really make it easier when DH is working Lates and nights. Little Max has kept me company this morning while DH sleeps off his night duty haha

With regards to progesterone I absolutely believe it has helped, maybe it won't work alone but it's all part of the rmc jigsaw. I'm still using leftover cyclogest even though dr s said its fine to stop because frankly I'm scared.

trying I wish there was more discussion regarding nkc, especially in the NHS. Prof quenby has been getting results for years and there is just no interest in her research. The midwife who I had my appointment with was completely clueless, not hostile just ignorant. She kept saying 'so you had IVF', 'no it was a natural conception', 'but then why were you on medication', 'because I've had three miscarriages!!!???'. i take an interest in current affairs and legislation because I think it makes me better at my job but most doctors and midwives in the NHS seem happy to just rely on training they received twenty years ago. Sorry, rant over

Wow u got a dog?! I feel left out! Maybe I need one too haha! Enjoy cuddles hope it keeps u busy and gives u lots of love!

Yay! You got a dog dr!! Best decision! You should def get one too Trying! Loki is happily sat chewing the life out of the remnants of our roast leg of lamb!

I also agree that it's about time the Nhs took more of an interest in nkc. And Drs/midwives etc should definitely take an interest in all aspects of the field they work in - even if it's not yet approved by the nhs. Just to have a baseline understanding would be an improvement. I find it fascinating that I seem to know more than some of the professionals!

Snoopy- so happy to hear things are going well! Is the cat out of the bag now or are you still keeping it somewhat private?

Trying- I know right?! I have no idea how it happened but we're loving it! We got her a bit older (almost 4 months old) so she is like a very polite little child haha. She's just snuggled seemlessly into our lives :)

Hehe Seeking- glad to join the club ;)

It drives me mental how uninformed NHS/midwives can be... Sometimes it seems their attitude is just to sit there and watch nature takes its course (life or loss), without actually doing much to assist at all (not even comforting).

Hey girls how is everyone?
Got my Argc review today shall come back with an update tonight.
Do ur mates know wot u guys have been through or do u keep it ursrlf/family? Just wondering coz my best friend has been quite good up to now but since the last once she's been utterly crap and it's pissing me off! I feel like she doesn't think it's a big deal anymore. She's not asked me how I am?! Or what my plans are? She said sorry when it happened and then has pretended like everything is peachy! I've known her for 15 years and lived with her for 6 of them and know each other inside and out. I think she just doesn't know wot to say or do anymore. And I get that. But a simple how r u I'm thinking of u is all I need!

Hey Trying! What are you expecting to hear about in your review? Is it if it's looking like a January cycle?

Well that's a tough one... Personally, ice only told 1 friend & my little sister. They were really supportive during the last loss. I actually kind of regret telling my sister because she just doesn't seem to get it... She thinks miscarriage has to do with like over exercising My mum actually told me my second miscarriage was my fault for continuing to exercise so I've just stopped talking to her about it. I'm okay-ish with the fact that these few people know because, at the time, I really needed people to talk to about it. However, I'm SO happy no one else knows (not the in laws, any other friends, none of DH's friends)... I know they would initially feel sorry for us BUT (our peers in particularly) can be really competitive so I think it would just turn into a baby race. And they'd be breathing down our necks wondering if we're still 'not there' yet. I prefer pretending it's just not on our mind! I agree that people just don't know what to say after multiple losses... So they bury it!

Okay ladies... Confession time! Last night I felt a bit funny and randomly took a clearblue. Came out 1-2 weeks pregnant! I did the math I figured I was 11 days passed my trigger shot... So maybe it was thought. When I got my BFN Saturday I may have been a bit hasty at 9dpo (or was it 8dpo- not sure ) but I was just so fed up with obsessing. Got our puppy and I forgot all about it.

So I went to check HCG today to confirm and it's come back at 47.4.... At somewhere between 11-12dpo. Last time my 14dpo HCG (though I may be cray at calculating) was 57.... So guess I'm whispering that 'technically' I'm whispering the p word...

Haha excuse the typos... Playing with puppy while typing!

Wow! That's brilliant news drttc!! Tentative congrats!!! Now just try to relax and take it one day at a time.

Trying I have actually told everyone. On pregnancy loss awareness day in October I decided to put a fb status up in support of the day by sharing my experience in the hope that women else where would find strength in it and that miscarriage wouldn't be taboo. I had a phenomenal response.
Some of my friends are brilliant and ask us how we're getting on, but my best friend doesn't. And u think that's just a because she doesn't really know what to say. Sometimes I get upset that she doesn't seem that interested. Other times I know it's not actually like that.
I feel far more at ease with my situation knowing that people know. I always felt like I was in some kind of race and now I feel like I've taken myself out of it and it doesn't matter. Does that make sense?

My boss has just found out she's pregnant after her first round of Ivf. So happy for her.

Yay! Drttc!!!! That's great. Sticky vibes to u xx

Thanks seeking. Funny how people react...glad u have found it liberating and well done on u. U should be very proud of ursrlf for being that brave! And most importantly that's it's helped u with ur journey.

Thanks Seeking and Trying!

I agree Seeking- very admirable. I think one day I'll 'come out' as well. I'm just not there yet... But it may be more to do with my social group! I do think it's so important to continue to bring RMC out the open so that women like us don't feel alone or like something is so wrong with them.

Keep us posted on your report Trying!

Drttc u seem a lot more
Hopeful this time? Just the vibes I'm getting via mumsnet!? How r u feeling?

Had my follow up

Basically he thinks my tnf was prob due to the pregnancy rather than a flare to the humira. I think he thought me getting preg was actually kinda frustrating for me as all it did was delay things and they were not able to do for me what they can with ivf. He told us to use a condom haha!
He basically feels that by doing Ivf my immunes would be better controlled and they could lay the ground work for better implantation-so clexane asprin pred and a endometrial scratch and intralipids or ivig pre a bfp with Pgd. I suppose like mr s thinks with having the pred and asprin pre Bfp. I've actually one done immunes pre a positive test once so there's some hope that I've not exhausted all routes.

He said it was kinda a mad scramble putting things together and throwing things at me while I'm an Ivf cycle it would be controlled and expected
He felt there was a lot I haven't tried (mainly not having immunes before a bfp-I've only done that once) and so hopefully next time may work
But he did say that in some people they can't understand why it keeps happening but for some reason they can't help and then surrogacy would be the next step. I didn't react to that very well! Well I kept it together in the appt but came out and felt pretty helpless. But dh said that he came away thinking there was a lot more they can do and that we haven't really given them a go at all as they hardly did anything for me compared to what they can usually do.

So tnf retest January 5th if it's low I start cycling. If it's up I need intralipid drips to lower my tnf till they are happy for me to start. Then when I start I'll have al the usual meds plus prob ivig this time.

Hey Trying! I dunno... It's an odd one! Even before I got the BFP I was feeling very 'over' the whole stressing/obsessing cycle and I just am not interested in living that way anymore (as it has no benefits). I've done my absolute best & believe it's completely out of my hands... We already thought this cycle was a BFN so anything beyond that is a positive. For example, we know we're still able to get pregnant which we were concerned about. Also, our puppy really is giving us so much joy... And knowing that no matter what, on Christmas Day we'll have each other and our little pup is a lovely feeling. And I'll continue to bulldoze through every hurdle life throws because that's just the way I'm built :)

Wow Trying that is so much information! It's amazing how much they have to offer though. It seems like they know what they're doing and through their experience believe they can help you... Promising!

Good attitude! :) hopefully ur lining has been selective this time around! Have u used the pred and progesterone this time with super
Ovulation?

Yeah kinda feel like I have a lot of avenues to explore still so don't feel it's time to give up. But also terrified that if the next one or 2 don't work out I do need to think of the next stage. But for now I'll just focus on this cycle.

I actually didn't start prog until BFP which I think is fine. I had been on prednisone for a week post ovulation but didn't take it on Saturday and Sunday due to the BFN Hoping it was still in my system- once again, completely out of my hands! However, I did do cheeky Intralipids last week on Thursday as I found out the place I do my tests (HCG, follicle scan, everything) offers Intralipids for £170 including prescription! Figured I'd 'throw everything' at my first SO. Also have been going to acupuncture weekly since end of October... She's going to feel smug when I tell her I got a BFP tomorrow lol! So yeah with all the extras I've done, I certainly have no regrets :)

I think that's a good idea. We're so well informed that if we can go into a cycle as prepared and confident in our actions as possible, it can make for a calmer experience. And I think we agree the less stress - the better!

Perfect! U have all the immunes too . I have a feeling this will be ur sticky one :)

Aww thanks, Trying! I hope so :) I think you and DH should get a house trained puppy for Christmas! I'm telling you- they are full of so much love & fun & cuddles!

Actually it's quite funny that today my HCG place CC'ed Louise with my results (because they'd sent her my follicle scan). If you remember Dr S doesn't approve of going off and doing your hcgs so I was completely outed whoops!

Haha naughty u!!! Don't get anymore done it won't change anything. I would but with me moving to London God knows when I feel I can't just have one for 1:2 months and then throw it to the side!!!

I had my Argc appt in sept and I'm still no closer to having my cycle!

Actually I am closet but it doesn't feel it!

I'm actually having a repeat on Thursday... In ma control freak- we know this! Depending on if Thursday reveals a doubling, then I'll decide on booking another set of Intralipids.

You are definitely closer! But i can 100% see how it's felt sooo far away for so long, that now you feel so ready for it to start NOW. Sometimes I think this journey has made me more patient... Other times I think it's just been torture with no patience gained whatsoever!