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

991 replies

sunnyday01 · 06/02/2015 20:10

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

OP posts:
Hula2 · 01/03/2015 23:17

DS took 18mns, no explaination except low AMH which didn t seem counted as the reason so we were officially unexplained. Did i have immune issues then and just get lucky ? Who knows. 2nd time preg was quicker, my periods had only been back 6mns and 3 mns had ridicously short lp due to bf. i got preg the month after i had my wisdom teeth out. I was pretty run down and had had lots of ibruprofen in the first wk of that cycle and was still bf and so am wondering if all this inadvertantly suppressed my immune system enough to get preg but not enough to last first tri and so i miscarried. Or did i mc because that was all bad for the egg or maybe none of that and just bad chromosones, hard never really knowing. I m also wondering about an dq alpha match with dh, has anyone had that tested ? I know you can t do anything different but sometimes having an explanation for why this all happens might help.

Rosa can t help with the insomnia other than to say after reading a book that suggested actually not fighting being awake but just accepting it and whatever thoughts come can actually help get to sleep that i did have some sucess doing that when i last took pred. Also heard exercising helps too.

Tryingno1 · 01/03/2015 21:53

Sorry hula ds! Hopefully a slip of things to come for u!

Tryingno1 · 01/03/2015 21:52

Hula I hear stories like that all the time! So glad that u had that bfp and then ur lovely DD :). It's hard isn't it...trying for a year and waiting and waiting...I'm on cycle 8 and as u can tell going a little mad?!! Did u have any reason for the delay in getting Preg? Or was it unexplained (now u know tnf nk cells stuff I suppose) . My HSG did show mild adhesions on right but nothing major and he said if may be adding a very slight delay but wasnt anything to worry about. But ow all my tests r ok. Awaiting for DH sperm Test.
Rosa we seem to be on a similar time frame. I really hope SO does the trick for u! No help with the
Insomina! It's a pain. Not taking
Pred this month but will next month so not looking fwd to the insomnia!

dildoos · 01/03/2015 21:50

Evening all, sorry haven't had time to come visit you all :-(
Will read right back but just read rosa I did find acupuncture helped and she also advised to start laying and think about each individuAl body part relaxing onE step at a time so start with feet getting heavy and work up and usually as I got to my fingers I don't remember much more. Hope that helps? X

Rosa27 · 01/03/2015 21:45

*wouldn't let my experience put you off

Rosa27 · 01/03/2015 21:44

Hula, I def wouldn't put my Humira experience put you off. In all the months that passed since I've not come across anyone else who had the same reaction. Hope your chat goes well tomorrow- and lots of water, vit C and zinc clear your cold.. And sleep!
Trying - if I don't have any luck after 3 SOs I think I should consider IVF too.. Know ovarian reserves are ok... But of course no idea about egg quality. It's over 6 months of trying this time and 2 months until a year since last fell pregnant.
Has anyone found a good way to counter insomnia when on pred? X

Hula2 · 01/03/2015 20:59

Hey trying its a year this month since i last fell preg and it sucks. It makes sense to get things in motion just in case you need ivf as it can take ages b4 you finally do it. With ds i d finally accepted we d have to do ivf and lo and behold on our 1st appt with the ivf consultant i was actually sitting there pregnant without yet knowing. Worst case u need it you ll have great chances because of your age. We ve ruled out ivf for no.2 as at my age and ovarian reserve our chances would be very slim, we d be totally self funding and feel that it all would be too much strain on our family so it either happens naturally (plus or minus SO) or not at all...as you say just gotta keep plodding on.

I haven t fully decided but think i m prob going to go with humira next month provided this rotten cold clears itself in time otherwise i ll wait till the following month otherwise if u don t start on cd 1 you ending up missing 2 mns ttc.

Tryingno1 · 01/03/2015 19:43

Thanks hula. No not tested I'm too early to! But each 3 times I've gotten preg I've just known. And this time there are no feelings! Sorry to sound like a broken record but how after 3 quick preg has it stopped happening?! I told u guys that me lower suggested ivf if it doesn't happen in the next few months.....my Gp has done the referal for me...so I'm trying to come to terms with that. I need to see mr s but coming to London is such a hassle! And I have a hen or wedding every other weekend! I think I'll book in to see him in April as then will be approaching a year of trying too...

Hula ur right-when u have had fun and been away from it-it does just hit u a bit more! Ah well, just got to plod on! Have u decided wot to do yet??

Hope everyone had a good weekend xxx dildoos ur little one recovered?

Rosa27 · 01/03/2015 16:54

Hula- that was- and pretty much is- my attitude. I don't want to think 'what if' in the future. And Mr S is one of the most successful at this stuff - certainly in UK- if not globally. I've never even studied medicine.
I have total faith in the treatment. Some of us just also have to balance others stuff too- like fertility therapy as well as immune therapy .. As well as the stress that goes with it all.. I really think it's important to relax as much as possible. Something I don't do so well!
In terms of the allergy - yes it eventually sorted out. I was obviously told not to take the second shot.
Trying - know how you feel. Hang in there. Make sure you're getting enough R&R. X

Hula2 · 01/03/2015 16:09

Trying sorry you re feeling crap. Have you tested yet ? Sometimes i think it s comes on worse when you be been distracted and kinda living life normally even just for a few days and then bam it s back on the emotional rollercoaster. Hang in there, i really believe you WILL get your baby. x

Tryingno1 · 01/03/2015 15:15

Rosa that sounds pretty scary! Glad it did the job at slightly reducing ur levels though...
Hula is hard to balance it all isn't it.
I'm feeling out again. :(
Had a good hen party though! Managed to forget it all and then when it came to me in a wave felt pretty shit. Oh dear!

Hula2 · 01/03/2015 14:18

Thanks Rosa for sharing your story. Sounds pretty scary. Did you have any treatment for it or did it just eventually stop by itself ? I m seeing Dr S tomorrow to discuss the plan further. I do struggle with taking any drugs but half of me thinks i should just go with all he recommends inc humira and then a few SO cycles then i know i ve given it a good shot. Good luck with SO, hope this is your month.

Rosa27 · 28/02/2015 18:24

Hi everyone. Sorry went AWOL.. Just had a super busy time with work, down in London, new drugs and tonnes of friends from London up staying. Too much to catch up on but did see Smidge has had a extra hard time- really sorry to hear that.
Hula- in terms of Humira, I obviously regret if as was money wasted and really frightening at the time not knowing what was happening... But I believe I'm in the minority and of course thought was worth a shot at the time. I had the blood test after and my levels went from 40 to 38.. So I suppose at least they didn't get worse. I had a head to toe measles type rash for a week or two. And for a nearly a week horrible asthma type breathing pains at night and which woke me up. I nearly called an ambulance one night as was very worried (as you are when you read about the side effects online in the wee small hours). I maybe should have known something wasn't right as a few hours after I had the injection my arms felt a little achey like flu. I'm now on hydroxychloroquine and is ok. I'm fairly sure my hair has got thinner and I've had regular pins and needles in my hands and feet- mostly at night. Hard to know what's causing what though!
Now I'm on first SO. I had injection day 11 but didn't see DH until end of day 12 so hopefully we've a chance. I felt headaches but ok really. The pred this time woke me at 3am so feeling pretty shattered but feel I need to do everything 100% by the book if also investing in SO.
I'm day 16 now and just feel pred tired and bloated!
Hope you're all having a lovely weekend and good things happen soon for everyone x

Tryingno1 · 27/02/2015 22:12

Thanks mackoo. U must be ready to start ttc soon. Good luck!

mackoo0524 · 27/02/2015 21:05

Hi Hula, yes I have high NK cell count as well, so will ne starting Pred soon! I'd give the Humira a go - not much to lose (apart from £700 and a month off TTC!) i suppose. Hope you get a BFP soon!

Trying, enjoy the hen do this weekend!

Tryingno1 · 27/02/2015 15:03

Hi hula. Can't rem rosa reaction to the humira-think it was average! Haha! As in not pleasant but not serious? Hopefully she will pop on and let u know!

I'm off for a hen party this weekend! Quite looking fwd to it. Happy weekends girls. X

Hula2 · 26/02/2015 22:44

31.6 on original bloods and as 0.6 over range decided to just go with pred, first try of pred screwed my cycle, retested cytokines last week and altho haven t got the number its apparently slightly higher so thinking i should man up and do humira ? Did u have high nk too ? Sorry can t remember your story that got you here.

mackoo0524 · 26/02/2015 22:36

Not at all. i think it was 32! (If I remember it correctly, the upper limit of the normal range is 30) what's yours?

Hula2 · 26/02/2015 22:33

Thanks mackoo, good to hear your experience and would be interested to hear how you get on with the results. What was your orginal level ? (If u don t mind me asking)

mackoo0524 · 26/02/2015 22:30

Hey Hula! I was on the previous thread but haven't posted for a while. I've had two Humira shots as part of my treatment with Dr S, so I thought I 'd share my experience with you. Being the wimp that i am, i had the shot administered by a nurse, something i would really recommend. Was very worried about the pain but it was actually much less painful than I expected - i felt a burning sensation for approximately 3 seconds but that was it! In terms of side effects, i felt a but more run down than usual after each shot for a good few days (could be placebo, who knows) but was fine otherwise. Having a blood test on Monday to see if it's brought my TNF levels down. In short, please be assured that it's not as scary as it might seem!! :))

Hula2 · 26/02/2015 22:27

Thanks trying, maybe a i ll pm Rosa. Did u know if it was a bad allergic reaction ?

Tryingno1 · 26/02/2015 19:00

Hopefully rosa will come on and let u know! I wonder if she's ok she's not been on a while...

I'm also on touch with 2 other girls via messaging on here. They have both had it and had no problems at all.

It is hard core drugs, but I suppose they are only 2/3 random infusions so not as likely to cause any long term side effects....and if u got an allergic reaction etc like rosa it would be dealt with then and there...

Hopefully someone with 1st hand exp will come along soon! Did u see mr s today?

Dildoos hope ur little girl is ok.

Hula2 · 26/02/2015 16:48

Hey ladies,

Anyone used Humira ? My cytokines were right on borderline and are now slightly higher so really the best thing would be Humira. I m such a chicken when it comes to taking anything i don t know what to do. I really want to give ds a sibling but i also feel this extra responsibilty as his mummy not to put myself at risk!

Any advice ?

sunnyday01 · 26/02/2015 13:50

yep we are now out of sync trying! i'll be ovulating weekend after next i think.

It feels funny thinking about it all again, i only remembered this morning that i had to book a scan and tell the mr s office about it!!!

OP posts:
Hula2 · 25/02/2015 22:24

Thats really good news dildoos, so glad she s doing ok.

Yep trying think we are pretty close this month (i m 5 dpo).

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