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

Trying - I injected in my stomach for SO and was terrified before but was totally fine!
Worth knowing Healthcare at Home charge more on a Sat. But next week the nurse will bring my prescription with her to save me being in day before as will be in London so worth asking if possible for you too?

Well plan is 6mns but who knows when we get there....i m thinking of doing dhea too to improve egg quality as much as poss and once cytokines results are back maybe a few goes at SO if they have come down. Got to live life too someday and since my fsh had crept up to 10 the clock is def ticking for me !

Hula - does the pred and /or intralipids not help with cytokines too-or is it just NK? Mine were v high and as had allergic reaction to Humira only went down 40 to 38 I think as couldn't take second dose. I'm sure and really hope everything you're doing is helping.
How old are you if you don't mind me asking? It's do hard to make a plan as you don't really know how you'll feel until you're actually faced with a choice. But whatever it is it will be right for you - really hope it all works out x

Just turned 40

Yep i think they both help with cytokines and my cytokines were nt too bad (31.8). Just hope i don t get a flare.

Ov today or tomorrow so we ll see how i go this month but the beer book said he saw best results 3mns after the humira as the cytokines can affect egg quality.

That's right - you're only a year ahead of me .. My birthday is a week today .. Think will get a reassurance scan in the morning so have a hope of enjoying some of it. Just spent the last hour reading other random forums and got myself stressed again. Different opinions on how long you take cyclogest for(some say through to 3rd tri?), how much (too much can cause development issues of sex organs?) and also how (read you need injections if immune issues to ensure it absorbs). I'm taking 400x2 pessaries. Then I started reading about 12 and 20 week scans - oh dear. Getting too far ahead of myself!
Hope you have good luck this month Hula .. I'm sure all the vits etc are helping with egg quality too. I've a feeling my cutting out gluten has helped too. X

Yep i know sometimes its bad to google/forum surf too much esp when preg but really hard when you re also looking for reassurance. Did you have a good luteal phase in your cycles, if so i wouldn t worry too much about the prog, i think its an extra precaution and really its the pred and intralipids that will be having most effect on immune issues.
I ve cut out diary and gluten in the last month too (and feel better for it) so hoping that will help too.

Rosa u need to step away from Google! Ur only going to drive urself mad, I got told by my consultant yest (well my DH was told that I had to step away from Google!) there's too much info out there and most of it unhelpful. So I'm having a Google free life from now (wonder how long it lasts!).
From my understanding prog naturally gets made by ur placenta week 10ish so u don't need extra...so week 12 is quite a normal time To stop. Every week u have a good scan ur chances of it going wrong and hugely dropping!
Happy bday for next week, I'm gonna be on my 2ww of ivf for mine

Hula- that's great you've managed dairy too. I tried for a few weeks but caved with eggs. Now have some every day but try limit it- eg don't kick myself if I have a pret chicken salad. Or gluten-free cake ;)
Trying - I know, I know! Just had a lot of fatigue so too much time too! Mr S says cyclogest until 16 weeks so will need to get his view. X

Had some suspect looking discharge when I wiped after a wee this morning... Water brown...naturally now very anxious and assuming the worst

Had some suspect looking discharge when I wiped after a wee this morning... Water brown...naturally now very anxious and assuming the worst

Big hug Seeking. It's awful I know.. Always been a worry sign for me. I'm not out the woods yet though but did have some at your point and it went. I doubled up on cyclogest then and don't know if it's coincidence. The hard but important advice to take it not to stress and relax. Everything crossed for you x

Seeking ... I've now the same... Light yellow. Really worried. Hope it's not because I walked for half an hour in the sun from the station when should be resting. Seeing Mr S tomorrow .. Just have to take my own advice and try hard to relax and keep the faith ... X

More of the same here. Pretty sure that me onto mc4 . I guess the scan tomorrow will tell me one way or the other. Feel stupid for getting my hopes up and thinking by some miracle we'd be ok. But I guess there's a reason Dr s specifically says not to get pregnant before starting the drugs.
If I do miscarry again should I still see Dr S on Thursday??
Feeling very down.
Hope you're ok Rosa, we both need to try to relax. Sending good vibes your way

Sorry seeking, how stressful. When is ur next scan. Lots of people spot and the progesteronr can irritate ur cervix. Don't give up hope yet!

Rosa, same for u. U had a scan showing ur ahead! Hopefully today scan will put u at ease let us know!

Determined if ur there how did u cope with this awful naseau of metformin? I'm on it for a pa1 mutation (!) not pcos and on 500 twice a day. Feeling very sick!

Best of luck today Seeking.. Think of you. When you know what's happening call Louise and see what she says about seeing Mr S later this week.
Trying- thanks, I know. Hoping nothing to worry about but just feel totally symptomless again except this colour .. And had horribly nightmares about miscarriage - fear or premonition? I don't know I guess will be like this all the way if I'm lucky enough to get all the way.
Nausea is awful - you poor thing. Hope you find ways to ease it. Assume you tried the wrist bands etc. x

So scan showed that I'm not as far along as I thought... That always makes me anxious. I'm 5+4, BUT. We did see a teeny little heartbeat via vaginal scan! So relieved. That'll be short lived but for now I'm a bit more relaxed. Will still see DrS on Thursday and then got ILI on Friday. Repeat scan at local epu on 28th.
Fingers crossed and a little prayer that things continue to improve and develop!

Great news Seeking!!! Really happy for you :) I also had good news today.. Heartbeat and 8+5. He said the scan I had Fri was not as accurate. I am also being allowed to wean off pred from 10 weeks and if scan end if this week ok - which is after my longest missed miscarriage growth stop - then I can start to think about relaxing - a bit.. Until the harmony scan! One step at a time is hard!x

That's good news too Rosa!! Brilliant!! I wonder if he'll want to scan me on Thursday ... ?
It's soo bloody stressful isn't it!
I can't wait to have my acupuncture treatment on Thursday morning, always feel a bit more relaxed when I've seen her.

I'm the same... Accu more for mind than anything else. He could see a bit blood which was cause of 5/6 week bleed and may mean I have more brown at some point .. But he didn't seem concerned.. I reckon he will want to scan you as he trusts his own results more obviously. Never know though x

Congrats both of u that's great news. Really pleased for u both.
Rosa out of interest when u started spitting did Mr shehata say to stop the asprin? And did he suggest u bed rest or to just get on with things?

I'm getting a bit anxious that I'm following another doctors protcol, and although it's all the same drugs me s would suggest the timings and doses are slightly diff. e.g I'm on dex not pred-both steriods but not sure why my ivf guy prefers dex. And my ivf consultants wants asprin from my day 1 of ivf cycle, but shehata wants it In you before in ur system. So they are minor things, but I'm just panicking as the day gets closer!

Ah great news ladies I'm super pleased for you both

Not been on for a while as crazy at work (understatement) and organising my bests hen do (20 women who all loved to party!) think I managed 6 hours sleep all weekend but have not had so much fun for a long time!! Lots of big fat belly laughs and so still smiling now despite being knackered!!!

Hi trying-is PA1 like mthfr or am I confused with something else? How long have you been in it? I didn't get too bad nausea but a weird stomach. I made sure I ate it in the middle of my meal and didn't move up a dose until I was tolerating it well. (I started on 1500). Now on 2000 and even still had a weird stomach when I increased...I just persevered basically. Some women are better when not too much sugar, no booze, eat regularly, (which you prob already are) hope that helps xx

Which doc are you with now? I'm coming up to June which is our deadline to try again but I'm not sure where to turn?!?!!

Xxx

Hi determined. It's diff to mhftr. It's a mutation for the pa1 gene (!). My ivf clinic tests for it and my consultant at my ivf clinic is who I'm now under! He's put me on 500mg bd. And also hydroxy for it, but I'm to start that in a few weeks during my IVF as its for a diff reason to u guys. I'm to go up to three times for the metformin but currently can't stomach it - just having mild naseau all day long. I'm taking it mid meal and having 3 meals and a few snacks. Good to know it does settle/pass. I'm hoping to get it up to three times by Friday so I can start my IVF cycle. But if not I may have to delay things

Great u had a good time, hen parties r brilliant at making u rem what wonderful times u can have and what great friends u have!

Hi ladies! On cycle day 7 now... No interesting news! Have caught up with the thread and will continue to lurk- but have decided to take a little break from thinking about ttc. It's nice to just tune out sometimes :)

Sooooo happy for you Rosa!!!! I think you know how much we are all rooting for you, and your triumph is our triumph :)

Sending everyone good vibes and I'll be checking up soon!

Thanks drttc and trying. I'm so rooting for you guys too and everyone who suffered RMC and has the courage to keep going.
Trying ... Mr S just said to double the cyclogest ... Didn't change the asprin. It's difficulty managing input from more than one consultant. I'm in that boat too and had to increase levo now decrease. Mr S has the edge on knowledge and experience so letting him trump the decisions!x

Hey Rosa, quick q, do you know what your TSH and thyroid antibodies levels were/are (if you don't mind sharing)?. It's not in my plan but I am aware of the TABLET trial etc and that some women are given levothyroxine with hashis.

Also it seems like lots of ladies are given clexane and heparin despite not having blood clotting issues...

Also anyone had IVIG??

X