Immune /natural killer cell treatment when ttc or pregnant (aka the 16th 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 sorry you are upset but no cycle is the same and who know this one might be THE one.
I don't know where you live but I have my intralipids at INS in london and they only charge £120. You need a prescription though. £300 per intralipid is loads of money...
Snoopy is it possible you are only ovulating now?

Few typos in there when u was copy and pasting- but they all went on to have babies!

SW, thanks! Does Dr S send your prescription to this place?

We are replying so quickly I can't keep up!

Trying I already paid for my intralipids and have received the package at home :-/ I'm going to have to hope that I've got some EWCM hiding in there I guess. Last month I had SO much it was kinda gross... Figures!

Oh I am not with Dr s. I found a gynecologist who is happy to prescribe it. Some private Gp do as well. I just can't afford to pay any more as am having them once a month. Also I find it better on ovulation day as they tend to mess up my ovulation...
Oh Drttc that list brought a few tears into my eyes. I was following / was on all those threads from the first one. I remember those ladies.... Guess it just reminded me how long we've been trying...

Thanks drttc. I'm sorry it all seems to be going against plan at the moment. But you might not ovulate until at least 36hrs after a positive test so you might still be ok? I understand your fears, I'm worried the steroids might mess me up too, but it could all still be ok.

trying sorry you're feeling down, but you are too going to have a baby! And you're so strong, you can get through these dark days and remember 'everything will be ok in the end, if it's not ok it's not the end'.

hula hope the scan goes well. That's the one to check the follicles isn't it?

Well there's no more ewcm, it's gone kind of a lotion consistency, sorry this is all tmi. I have no idea what it is, cm, post dtd stuff, pre seed remnants? Interestingly a week before my first bfp I noted ewcm. Wish I had kept sort of record of this month but never mind. I don't want to get too paranoid about it all.

I can't explain how much better I feel physically. With a nice, normal routine. Even though I'm starting work at 0630am, I don't feel that real exhaustion deep down in my bones anymore. I can't believe I abused myself for so long! Now I just need a better job permanently, anyone know of any jobs going?!

sw is your gynaecologist in London?

Snoopy he is abroad. But within EU so good for prescriptions. Also a consultation and scan there only cost me £50. The same with my endocrinologist. So I always book loads of appointments when I go 'home'. It all adds up...
I know exactly how you feel about the job. I work a mix of days and nights. Didn't do any nights for quite a while and felt like a human being again.
Sadly my daytime job is going to finish in October so will have to start looking for a new one soon.
Just need to figure out first what we are doing about TTC first (if we decide for IVF I can't start new job till maybe january..) hope you will find better job soon. So you can relax a bit

Thanks drttc ive read those threads a lot! I don't know why some days I stillpanic I'll be that odd one who won't get there. I suppose it's reassuring that we all feel that, and it's not just me tempting my own fate!
I hope ur feeling ok re intralipids, I'm sure u know ur cucle quite well and like snoopy said u may not ovulaye for a day or 2 still. Try chillax ! (Not possible i know)
Snoopy glad ur feeling a bit better about things....it takes time to heal and come out of the daze. It's obviously never exactly the same but I suppose that's wot life is! Things that happen change us...
Seeking-how was it? Hope ur ok....

Drttc - sorry things aren t going to plan but i def wouldn t count yourself out for this month but I can sympathise about the worry of steriods messing with ur cycle, i m having a dilemma as to whether to risk trying them again. Not sure if the SO drugs can overide them messing with things as i had a 13 day cycle the month after i first tried them on a natural cycle.

Trying - ds is doing great thanks, hope you have a realxing break and dont miss your dh too much.

Snoopy - glad you re feeling better, work and routine can def be good distraction. Yes the scan is for follicles and when to time the trigger injection to release them. The aim is to have two follicle.

Swnanny - sorry this has been such a long haul for you. Are you having intralipids every month while trying naturally ? I asked dr s about that instead of steriods but he said because its expensive and only last 4 wks he didn t routinely do it.

Rosa - are u lurking ? How are you doing, is it ur 20 wk scan yet ? I hope all is well.

Hi determined, seeking and anyone else i ve missed.

Something i came across and wanted to share with u ladies so you d know about it for the future (and now Rosa) is a petition about preg women getting tested for strep b. Its been started by a women who heartbreakingly lost her baby at 9days old due to it. Its something a quarter of preg women can carry and pass to the baby at birth and can be prevented by testing in late preg and giving antibiotics in labour, however the nhs don t routinely do this.
Here's the link for more info and if you wanted to sign the petition:

www.change.org/p/nhs-provide-tests-for-group-b-strep-to-prevent-any-more-avoidable-deaths-of-newborn-babies

Sorry you're worrying Drttc, but like the others have said, do t count yourself out yet.
Can I ask how the pred effected your cycle?? This will be my first cycle on it as it is supposed to have been taken. Did it shorten your luteal phase?

Hey Seeking! Thanks, I'll try to be more positive!

It made my cycle a mess. I had EWCM on cycle day 7, sore boobs for a few days after that (which is why I knew something was odd as I NEVER get that), couldn't detect ovulation, and then only had a 23 day cycle (has also never happened). I was acutely aware from the beginning of that cycle that my body was acting weird. I still ttc but then skipped Pred for that month (knew there was no point) and the next month everything ran like clockwork again and I got a BFP at the end.

Oh gosh hula, a 13 day cycle?! And drttc, it must have been a nightmare. Do you think that it could be causing my odd stuff down there I guess I only have to wait until Sunday/Monday to see the damage it has done.

Thanks for the info sw. I might look into that as a way of saving money. I'm dual nationality myself so it might be worth it. It's so hard when your future is uncertain to know what plans to make for the best. Night shifts are the pits aren't they. I used to really enjoy them but I am honestly a much more improved person on this schedule.

trying I feel that doubt everyday. I even said to DH yesterday please don't get your hopes up this cycle. If it's going to happen it'll happen next month, just in time for me to miscarry when we're on my special birthday holiday. I don't even believe I will conceive again if I'm honest. I just want my puppy (I know mentally it's a replacement baby), a new job and to make the most of my life.

Should here about the job I applied for soon, pretty sure I won't get it because of sickness but please send your good thoughts my way.

Snoopy - it was very upsetting! It may well be. Is this your first cycle using Pred?

Well I've just had my intralipids done! Should be ovulating today and so DTD this morning. I think this is us done for this cycle! Can't say I'm optimistic about pregnancy BUT talking to the nurse about her other patients & their struggles really helped me put things in perspective. It's so scary how with one swoop life can take everything from you... And it has NOT done that to us. It's so special that we get to come home to loved ones & hold each other every night. Motherhood is such a blessing and I would be so grateful to be able to have a child with my wonderful husband... I'm also grateful to have him to begin with! Sorry for the rant, I've really worked myself up and am super weepy!

drttc don't apologise. You are perfectly entitled to feel down sometimes in these circumstances. Life is so cruel. Last night we had dinner with friends and in the two years they've been married her mum and his dad have both been diagnosed with terminal cancer. I can't imagine what they're both going through. But we do have hope. Sometimes I downplay so as to prepare for when the worst invariably happens but we are going to get there one day, all of us.

It is my first pred cycle. I took my eighth dose of steroids today. The past couple of days I have been so bloated and when I'm on my way home after work I get awful cramps in my legs (I'm not sure if this is just going from work boots to converse but never had it before steroids). And sorry for TMI but there is a lot of stuff going on down there. My wtf cycle was my standard 33 days so I presumed this one would be fine and didn't start taking the pred until cd21 in the hope it wouldn't mess up ovulation but now I don't know what to think. If it was late that means this cycle is completely wasted because we only dtd every other day in what we thought was our tww.

Gosh Snoopy that's so sad for your friends :( Yes, hope and gratitude are beautiful things :)

If this is your first Pred cycle why did you have a wtf cycle before?

It shouldn't mess up ovulation for your first cycle as you wouldn't start the pres until after ovulation. It may affect the following cycle though.

Are you using an ovulation kit? The clear blue digital kit seems to be working for me. Just make sure to follow the intructions about when to test (depends on your cycle length).

When I saw Dr s after the last mc he advised to not try during the wtf cycle and just let my body recover so not take any pred and then start again the cycle after (this cycle) if we felt ready.
I told him I was rubbish with opks, and I'd be damned if I'm shelling out more money on a clear blue one, and he said if my periods were fairly regular I could just estimate when I was likely to ovulate and start the pred then.

By wtf cycle do you mean the one after your miscarriage?

Yes. As in the time between the physical miscarriage and the first period post miscarriage.

Oh right!! For me the wtf cycle is the one AFTER using pres for 1 cycle. My cycle directly carrying on from mc is usually totally normal. Figures!

Well if that was your wtf & you weren't trying - it's good to get it out of the way! When you get back to ttc hopefully you'll be running as normal (cycle-wise)!

Hi ladies.

You, and this thread, were recommended to me by a friend. I have a 2 and three quarter year old DD, and am ttc number 2, but have had 3 early miscarriages in the past 6 months, all between 4 and 5 weeks. I have an appointment with a consultant in September, and a head full of anxiety, desperation, worries and hopes. I am 40 and my first pregnancy went without a hitch - conceived on second month of trying. No idea what on earth is going wrong this time. I want to see the consultant before I consider going private for nk cell testing, and I think my luteal phase is OK at around 13 days.

Any advice, ideas for what to pursue, general handholding massively appreciated - this is all so hard and unfair and I have a horrible image of shrivelled ovaries full of rubbish-quality eggs, and of time running out.

Thank you in advance - always find mn a bit intimidating and hoping no-one pulls faces at me.

Welcome Yomping Jo !

So sorry for your losses, this is a tough journey and i am also 40 ttc no 2 so understand the age concern. I think its common that its assumed egg quality is the issue but quite a few of the older sucessful ladies on here actually had immune and/or clotting issues (hope, rosa, freelance girl). I found a book called 'is your body baby friendly' by dr beer a really useful read to understand the immune stuff and how it can happen after an apparently fine first preg.

Good luck with your appt in sept and i hope you can find the support you need on here, all the other girls are lovely.

Hi All

hope you are all doing ok, haven't checked in for a few days and there has been a lot of discussion. I am convinced we are all going to get our happy endings no matter how long it takes us to get there. It can be so hard at times, even now I am pregnant I am scared and worried - rather than worrying about getting pregnant, i'm worried about staying pregant and the baby growing ok.

I have my scan with mr s tomorrow, hopefully all will be ok, totally got scan fear again - i want the scan to reassure all is well, but i'm so scared that all is not going to be well. DH doesn't really get it, i have told him i don't think the worry will go until i actually have the baby! its not all consuming worry, just at the back of my mind. I'm feeling really good over the past week, the tiredness seems to have gone and feeling a bit like my old self. I'm hoping this is because the symptoms tend to disappear at the end of the first trimester rather than anyhing else. Also weaning off the steroids - 3 days to go!

Sunny best of luck for tomorrow, hope all will be fine.
Jo is the consultant you are going to see NHS RMC one? If yes they should do quite a lot of tests to look for blood clotting issues etc. I am so sorry you go through all this. I am going to be 40 in a few weeks and had multiple chemicals (losses the same as you timing wise).
If you are happy to wait for your consultant appointment than based on what s/he suggests you can decide to have NKcells checked or not. If you have any autoimmune problems or family history of it I would recommend to have it tested.... meanwhile if you are not taking it yet you could try coenzyme Q10 which is good for egg quality (I am not saying it is your eggs but I get it mentioned at every NHS appointment)
Hula thank you. It feels like forever and we are nowhere closer to any solution... intralipids are actually the cheapest of all the immune treatments (1 bag is around £10 it is the clinics who charge so much just to administer it...) I was having them once a month before my retest. Also I used to have quite a lot of joint pain (knees, wrists, shoulders...) which stopped since I am having intralipids so clearly they are good for me... Hula was it you having humira recently? If yes why was it? Was your TNFa too high? Also fingers crossed for your scan, hope there will be nice folicle or 2 there...

AFM I just received my retest results and they are not good. Well while INFg is nice and low my TNFa is too high now.... Have had enough of my immune system now.... feels like I don't have any energy to fight anymore...

Hello all, just need a rant.

So after nine weeks (average 22 day wait my arse) I finally received a letter from the NHS inviting me to an appointment on 25th september at a fertility clinic, not a specialist RMC as I was promised.

They also included a lovely pamphlet, full of grammatical errors, pointing out that I should consider abstaining from cocaine, heroin and marijuana because they could have a negative affect on a foetus.

I know these pamphlets are designed for a wide audience but really?

It doesn't even say what I should do if I get pregnant in the meantime. I feel so let down. All the reassurances from the GP, all the promises of 'extra support', they were just saying what they had to to shut me up weren't they?

I know there are people in worse situations than mine and I am very lucky to be able to afford to see Dr S privately but I feel utterly defeated right now.

Good luck with your scan tomorrow sunny, all my fingers and toes crossed for you.