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

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

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!

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

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

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.

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!

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

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

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?

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.

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

*wouldn't let my experience put you off

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

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!

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

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.

Hi all - it is so hard no knowing why things worked/ didn't work - especially now we're all desperately trying to piece together something that works for us. As the random genetic factor will always be there, I guess it will always be hard. So many miracle stories happen when people think it's over though- there must be something in that (the mind relaxing, the body relaxing).
Thanks for insomnia tips. So skint but think will try with accu again too. Easier than exercise ;) but yes should try that also, even if just a long walk - and the relaxation techniques.
Hope it's a good week for everyone x

Oh hula. Like rosa said so hard trying to search for an answer. Must have be devastating to get preg so quickly (after u were prob expecting it to take forever) and then loose it. It wasn't that long ago, so u will get preg again. We just all have to keep plodding along...our time will come one day!

I felt the same about ivf hula- figured I should get everything ready tests etc so when in ready I can go for it. I'm thinking of waiting till may/June which will have been 11 months of trying...

Rosa did u have a few follicles ready to pop?!

I'm shattered after the hen! I'm obviously getting on a bit!

Trying - no just the one, and didn't see DH until over 24hrs after the injection so not gut high hopes. Next month he's asked me to increase my dose so should get more follicles. Also was told had a good ovarian reserve and FSH was only just above 6 so reasons to not give up hope...
What do you need to do for IVF .. Is that too big a Q for here and one for my GP? X

*got .. Jeez I need to read back before I post!

Hi rosa. Well basically in my area CARE are the private and nhs providers for ivf (which is great as they are a decent clinic). The consultant I saw who did my HSG wrote at the end that if I didn't concieve in 2/3 months I should go for ivf. So I just flashed that infront of my Gp! To be honest I don't think I meet the NHS criteria, as its 2 years if no reason (unexplained infertility) and anytime if there is a reason (I don't have a reason for why it's not happening except maybe a small adhesion that might be delaying things slightly). Anyways my Gp didn't really read the letter properly and referred me! But if I get turned down at a funding stage I'll just pay for it privately when I'm ready to that the step. I just wanted the ball to be rolling as it can take months before all the paperwork and bloods are done...at least I'm in the door and can deal with the rules at some point!

I'm not sure what the rules are for ivf for over 35...as in when u can be referred if its unexplained...but u prob have had all tests done except the HSG and sperm test-ur entitied to them on the nhs as u have been trying for 6 Months. (Under 35 you only get them if trying for 1 year). So might be a good idea for ur gp to do those for u? Then u know everything is workin fine and it wil just happen/if its unexplained infertility at some Point u have the tests in hand and can go for ivf if its needed.

It sounds silly, but u will get preg and u prob don't need those tests. The reason I say it sounds silly is that I still had them but when I look at ur situation I feel more hopeful than when I look at mine!! Haha!

People say it takes a few months of SO to get the right dose so hopefully next month there will be a couple of eggs ready to pop!

Fsh of 6 is great! Mine is 6 too...(not that I've managed to get preg again but I've been told its totally normal)

Just popping in as been a manic day - dint worry too much rosa as it only takes one egg! But trying us right - the first couple if months is often getting the dosage right - are you on 5mg?

Also you should give SO 6 go's as it generally happens on round 4-6 if it's going to happen - as the medication builds up in your system etc. I wouldn't quit after 3.

Thanks Sunny. I'm on 5 but to go to 7.5 from next month. Just hope it makes sense at my age to do this and not go straight to IVF. How you doing now?
Trying - thanks for the advice.. I will chat to Mr S about it next time and in the meantime try get tests ticked off as you say. I don't understand why you think my situation is more hopeful than yours though.. Sounds like we've exactly the same background except I'm about a decade older
Anyway .. Let's hope Spring is a fertile season for us all. Still time to have Christmas babies..
So hard to imagine it after spending so long having hopes taken away it's too easy to feel pessimistic.. But I'm going to be the one reminding us all (and myself!) that R&R and positive visualisation can sometimes get amazing miraculous results on their own.. So if we focus on that plus following the medical advice it surely should just be a small matter of time (please this year!) x

I know rosa - I think I keep objectivity forOthers but in my situation it goes out of window and I start thinking all sorts! And ur not a decade Older!

I like ur attitude! And u r right-being positive makes such a diff but its so hard sometimes. I think im postive 70 percent of the time, the rest of the time I get overwhelmed with it all and cry (a lot!). But I suppose that's normal!

Here's to 2015!