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

Drttc - good to hear you ve got a plan. I was reeling after my results as thougt they d be normal and did feel a bit overwhelmed with all the treatments. Sorry they we re more complicated but even a 70% chance is great.

Lillies still thinking of you and so hoping for a good outcome on thurs.

Sunny fingers crossed for a bfp on thurs.

Afm got my peak today on day 12, so prob day 13 ov which is a relief after day 8 last mn. Typically today ds and i came down with the tummy bug dh had at the weekend. However i was determined not to miss this one so managed a quick bd despite feeling shocking ! Oh the things we do ....

Thanks for the kind words, Trying! A break sounds lovely. How long have you been with Dr S? Have you conceived on treatment?

I'm off on a long holiday soon so can't wait!

Thanks Hula! Haha and well done on the cheeky bd ;) Good luck with the tww!

Hi drtcc-no I've been trying for 9 months but no bfp! That's when i saw Mr s-last July I got my results. My NK cells were slightly hyperactive. I'm off on a European city break where there is a lot of cake and don't think it will do the scales any good!
Hula good effort! Fingers crossed for u! We are out of sync this month as my AF was 3 dYs late!

Thought I'd update the list with my results!

2nd Trimester
Hopender- (38 yrs old) 7 miscarriages, one DS, Was on pred, cycolgest, baby aspirin and intralipids. Now only baby aspirin! (20 wks)

1st trimester
6 weeks - lilliesandchocolate (32) 1 mc, 1dc, 5mc, 2nd dc on pred and cyclogest and the vitamins. Now hoping dc3 happens with pred,cyclogest,intripalids and the vitamins.

TTC
Sunnyday (32 yrs)- high nk cells - hydroxy, pred intralipids - 3 mc (1 on treatment) also doing super ovulation - round 1 (got bpf on round 5 last time)

Tryingno1 (30 yrs old)- 3 mc. Ttc since April 2012. 5.5 weeks, 9 weeks, 6.5 weeks. High nk cells. Pred and intralipds.

Hula2 (39 years) - one DS (took 18mns with low amh but no other probs), one MC at 9wks, ttc no 2 19 mns (12mns since last mc), low amh, borderline cytokines, high nks, on complex nk plan (pred, intralipids) about to do Humira for cytokines.

Rosa (38 nearly 39yrs) - 3 MMC (11.5, 6.5, 7.5). 6 months ttc on treatment. On complex programme for high NK, cytokines and thyroid antibodies (hydroxy, pred, intralipids)- had allergy to Humira. Also on SO programme.

Drttc- (28 yrs old) 3 MCS (6 wks, 4wks 2 days, 5.5 weeks), very high NKC on complex treatment plan: 25 mg pred, add cyclogest on bfp & Intralipids every 4 wks until 16 wks. Testing on April 9th/10th!

WTTC

Determined123- awaiting (retest) results. 4mcs (2 on treatment). PCOS, Borderline NK Cells and v.high thyroid antibodies.

Still here lurking away ladies, thank you for all your thoughts. Your first post drttc, made me well up, wonderful words.
1 more day before a scan at 11 tomorrow. Still no red blood as yet but brown mucus has continued, this coupled with the scan date not matching my own is what has convinced me not all is well. My boobs aren't sore anymore either. Have spoken to my EPAU several times and although they can't book me in til after the scan they have said they will bare in mind my wish for a ERPC under GA for Friday. I just can't stomach the thought of going through another miscarriage plus i hope that it could be tested for answers as to why. It will be the first time I've not done it naturally.

Been having lovely cuddles with my pred baby this morning, she's telling me I'm her darling. But her and the oldest are both poorly so a good distraction at least!

It's so true, lillies. You're amazingly resilient, and that's why you have your little ones to cuddle now :)

Sending you good vibes for tomorrow x

Thinking of u tmrw lillies xxx

Sunny - could you please tell me more about hydroxy?

Sorry to ask, but has anyone got any experience of erpc?

Have been catchin up with Downton, last nights episode the dowager said "hope is a tease. Designed to preventing accepting reality". With what's happening with me right now, the limbo is giving me such a small but still there wish for a miracle. Need to remember these words for my situation for tomorrow, even though I KNOW it's not worked, it'll still so awful being there told the words whilst I'm at my most vunerable. I need to try and keep control, to sort the next steps.

Thank you for letting my vent, give me time and I'll be back cheerleading xx

Love Downton... Not watched it in ages though! I think it's nice to distract yourself a bit. Give your mind a rest and try your best to relax by paying more attention to things outside this situation. I know it's hard, but think of it as a well deserved 'mental break' from the stress. Read a book, watch Downton, play with the kids... Anything that will give you a bit of relief from the heavy/serious things that are going on!

Bfp for me this morning, was expecting that result this month I think. Feeling a bit fed up by it all this morning.

Morning lillies...thinking of you today! I think is ladies must be some of the biggest watchers of distracting box sets!! I found keeping busy is the best thing I can do!

Sunny just to check bfp or bfn? Am thinking you wouldn't be fed up with a bfp?? ;)

So I got my results, not great. My cytotoxicity has got loads worse and in the blood tests the meds they test didn't bring them down to a normal level so doing what I have been was never going to work. They want me to do 14 days of steroids and repeat another test to see how it impacts me (I thought that was the point of the test?!) then they will see what they can do as it will most likelt be a combo of drugs and higher doses (if it even works) which is my absolute worst nightmare! To add I had a 6 day LP which is my record for the shortest I ever had and full of cold again so cried my eyes out all last night! I feel rock bottom with it all at the minute :(

So not great news from me - I wish one day I could post a happier more positive post ;) xx

Oh determined in so sorry to hear that. I can understand that must have hit u for 6. Does Mr s think it's the 2 miscarriahes which has triggered it all off? .like we always said on this thread u will get there it's just going to be a long process. But like ur name..if ur determined u will get there. But it is just so shit right now. So not fair. I'm Sorry

I wondering if this is the cursed board and we all need a new thread with new names?! Not much luck on here after hope...

Sunny-I think u maybe meant bfn too? I'm sorry, again so shit. But u know it took u 5 last time so keep working twds that...

Lillies let us know results. Thinking of u. Xx

thanks Trying im not sure they really know if I am honest...I would assume yes it is the mcs but then nk cells change all the time.!?!?!

x

Yes bfn, unfortunate typo - feeling sorry for myself today :(

Determined are u trying again or waiting?
Are u sticking with Mr s or considering a second opinion? I know at one pt u were...

Anyone else get the hugest bruises on asprin? I'm so sensitive to it! Wake up with a new one every day! I stopped it a while ago but I decided to do mr s plan prop this
Month!

:(
Sunny I was thinking quit facebook! I have and its made me so much better!!

No not allowed until I have more tests unless I don't go ahead and try my luck without! Not sure on 2nd op, not sure it's worth getting more info in my head!

Yes I do! So attractive!!

Sorry for bfn sunny x

I know determined ur right too much info can be a bad thing! I hope they drop with the steriods and hope u have something fun planned soon to pick u up

Determined, what is cytotoxicity? Is that the impact of NK cells? How long has it been since your first blood tests? I'm surprised they changed to the point you would need different treatment... Weren't you on a combo of drugs before as well (pred, cyclogest, and Intralipids)?

Also, what was you pred dosage?

Tbh I don't really understand it but it's to do with the test and the impact of the different meds on it. I.e how much pred reduces your cells to a normal level?! Only been 8 months and 2 very early mcs! Crazy isn't it and yes was on a combo (25mg pred) so they may tweak this and add others in ;(

He said something along the same lines to me and I'm wondering how similar our results are! I'm looking at my results now....

NK Cell 50:1 was 30%
NK Cell 25:1 was 23%
NK Cell 12.5 was 17%

Then it has the responses to all the treatments... Do you want to compare? I've got 6 different rows:

IVIG 12.5: 18%
IVIG 6.25: 25%
prednisolone 10mg: 24%
prednisolone 5mg: 27%
intralipid 3mg: 23%
intralipid 1mg: 28%

He said ideally you want to get them to about 20% so that's why he said he'd combine pred and Intralipids for me... Apparently the IVIG treatment is very expensive!

Sorry I do research for a living and so investigating is one of my annoying traits!

The ivig is £2000 a pop!!! I'll did my results out drttc so you can see what mine are like! When I had my mc I asked if the total number or cytoxicity was more important as my total is about 648 and my cytoxicity is 38% - he said neither is good if it's higher than normal but the cytoxicity ones ate 'more relevant'