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Immune /natural killer cell treatment when ttc or pregnant (aka the 16th pred thread!)

992 replies

sunnyday01 · 05/06/2015 19:22

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

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sunnyday01 · 29/07/2015 10:41

Snoopy, I found the same as Hula, my cycle definitely shortened - always had scan day 10/11 (first month Dr S says when to go in for scan, and then once you see how you respond to medicine then may change accordingly - although mine was always day 10/11). My AF generally arrived on day 26 rather than day 28/29. What you need to remember is the day of your scan is necessarily when you ovulate - its only to provide an indication of when you need to trigger - I often used to trigger on day 11 which meant ovulate on day 13 (36 hours after trigger).

I personally liked SO as I knew there was something happening and roughly when, although it works out about £250 a month with scan, injections etc. i'm not sure if Dr s has certain requirements he likes you to meet before recommending it!

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Hula2 · 29/07/2015 09:00

Ah i see snoopy ! That sounds positive then.

With the SO scan Dr s asks when you normally ov and works from that so if you are day 14 he says 11-13 for scan. He ll then adjust it if the medd make u earlier.

I actually worry about shorter cycles (since my mc my ov is now 12/13 instead of 15/16). Both times i ve been preg have been from later ovs (DS was latest ov i ve had on day 18/19). My acu lady actually tries to get peoples cycle to have an ov btw 16-20 so the egg has time to fully mature and lining is ready. So who knows what is best but there is some study out there that found a huge variation (like day 8-25) and concluded it didn t affect preg rates ! But i know its hard not question these things.

Snoopysimaginaryfriend · 29/07/2015 07:03

hula sorry, OH is occupational health at work. Apparently the person who had my case previously had incorrectly put me in recuperative duties when it should have been restricted. I have to get a letter from Dr s about treatment and importance of staying calm but my new case manager used to be a midwife and she said she'd have no problem recommending I stay office based. She asked what my previous role had been and I said 'going to 999 calls' and she replied 'no no no no no, far too stressful' haha.

Quick question for those who have done SO, how do you know when to scan? Were your cycles always shorter? This long cycle is worrying me, even if I did eventually ovulate would the egg have been bad quality?

Lisachick1 · 28/07/2015 22:16

And thanks Hula too for all the info, sent my msg before seeing yours. Xx

Lisachick1 · 28/07/2015 22:13

Thanks everyone for making me feel so welcome and for sharing your experiences. It's a daunting journey to be starting on! Hi Tina - hopefully the preds won't affect us too much, fingers crossed it all works out for us all. I keep thinking that my age is massively against me but I am already blessed to have a gorgeous 2 and a half year old daughter - had her when I was 40 so there is hope!

Sunnyday that's great to hear, congratulations! Who knows if it was the Hydroxy, either way it's wonderful news and gives me hope that it can all work out. Take it easy and try to relax if you can xx

Hula2 · 28/07/2015 20:50

Evening ladies.

Thanks Rosa for your SO info, i ll def aim for a no later than day 10 scan next time and i m very glad we at least had dtd b4 (only once but at least still gives us a chance).

Welcome Tina and Lisa, sorry you find yourselves here. I know i found it pretty daunting with the idea of a whole load of meds esp during preg. I ve not had sucess yet but heres what meds i ve taken and how i ve found them:
Aspirin - no issue
Pred - mild insominia (harder to get to sleep, waking earlier), feeling a bit revved up (like 5cups of coffee - good for getting housework done !), no other probs but did mess my cycle (cycle after was only 2wks!) so have been too chicken to try again since.
Humira (4 injections) - was really scared about this one after reading data sheet but so far no noticeable issues.
Letrozole - no probs except maybe a bit more emotinal as came off.
Ovitrelle injection - no issue.

Good luck on your journeys.

Snoopy - is it work who want to talk about how your treatment is going ? Sounds odd they can ask about details and annoying they won t do it by email.

sunnyday01 · 28/07/2015 09:52

Hi Tina and Lisa, welcome to the group! We are all a supportive bunch of ladies on here, who have experience of all the different emotions that you go through n this journey, so hopefully you will find all the support you need.

I have been lucky in that the steroids have given me very little side effects on a month by month basis. I fell pregnant after 5 months on the treatment but sadly miscarried at 5 1/2 weeks. I'm pregnant again now - just reached 13 1/2 weeks and had a scan with Mr S on Saturday just gone and everything seems to be going ok, and had my last intralipid yesterday. I have added hydroxy to the mix of drugs since the previous mc although I have no idea if that has been the difference this time!

Once I was on the pred for a longer period when pregnant I really noticed a change in appetite and some nights I didn't sleep as well but it was maybe 1 or 2 a week rather than every night.

Good luck with your journeys and make sure you pop in from time to time.

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Snoopysimaginaryfriend · 28/07/2015 07:07

seeking I think it's really a huge positive you didn't miscarriage. Hopefully knowing you can rely on the treatment will ease some of the pressure. One challenge at a time, and you've conquered that one!

Hello to tina and lisa, so sorry you both find yourself here but we are a very supportive bunch.

Had a call from OH on the way home from work. Apparently they need to speak to me to ensure work have made the changes they recommended and see how the treatment is going. I explained I wasn't really free to speak and it might be easier to email me but they insisted it had to be done in the phone so I have an 'appointment' at 10am. Don't know where I'll find an empty office to speak to them and I'll have to tell them that I haven't even finished one cycle yet, not great eh? Sad

Tina84 · 28/07/2015 06:40

Thank you ladies for you kind and supportive messages. Will keep you all posted about my progress and experience.

Seekingmiracles · 27/07/2015 22:39

Hi Tina and Lisa,
Welcome. Sorry for your losses. I hope you find this group of extraordinary ladies as supportive and helpful as I have. Although we each have our own battles we are all in similar positions and have between us been through all sorts.
Good luck with your cycles ladies, I hope you get your bfps soon.

Lisachick1 · 27/07/2015 22:10

Hi everyone

I hope you don't mind me joining you all, I'm just about to start DrS treatment too (preds for 10 days from ovulation then lots of other things added to the mix if I'm lucky enough to get PG). Think I'm gonna ovulate in 3 or 4 days.

Have read through lots of the posts and it's wonderful to see how lovely and supportive you all are, it's such a horrible thing to go through. Like a mad roller coaster ride of ups and downs. I've suffered 3 miscarriages since September and at 42 I am so scared I'm running out of time. Nhs harshly told me I was too old for tests so we found the money to go see DrS. Wasn't sure I had time to wait for nhs anyway.

My Nk cells were 35 but in the tests the preds bring it down to 14 apparently. So fingers crossed. Not sure if that is a really high count or not! And if it all works out my older eggs could still let me down at any point but one step at a time...!

This thread has been so helpful to me with all of my worries and concerns. Scared of my cycle going all wrong and am getting a bit crazy obsessed with each cycle thinking it could be my last good egg at my age! The whole thing is driving me a bit mad I think...

Anyway, just wanted to say hi really and introduce myself. Sending positive thoughts to all xx

Drttc · 27/07/2015 21:22

Also- other than my cycle blip, I've not had side effects from meds. But not been on them terribly long either!!

Drttc · 27/07/2015 21:21

Hi Tina,

I got pregnant within 3 cycles, but miscarried again. The Pred messed up my cycle & so I skipped it on month two. I also have a history of catching quickly (3 pregnancies in 5 cycles). However, I have v high NK cells so it looks like I need stronger treatment. I'm now taking intralipids before even getting BFP! I think all our experiences vary a bit, but we get there in the end :) Good luck!

Rosa27 · 27/07/2015 21:03

Hi Tina - I took 8 months on treatment to fall pregnant. I found pred tough with insomnia but manageable. I didn't get weight gain until after about 6 weeks but you don't care so much about symptoms at that point. Best of luck to you x

Rosa27 · 27/07/2015 20:59

Hula - really hope you caught one by dtd early. I think that's what happened to me.. My first SO cycle was useless as I think I told you , on the second we dtd day 10- the day before day 11 scan and my mine were 26 , 16.5, 14&11- was told the last two were two small but the biggie would pop before injection had chance to work so v glad dtd before as assume that was 'the one'. Was told to do injection anyway and dtd day 12 and 13 incase it caught the 2nd biggest one. The drugs make your cycle shorter so I think good to dtd every 2nd day from day 8. I ALWAYS used to ov day 17 according to these predictor kits but think you need to put all that aside when going SO .. Everything crossed for you this month, or you'll be 3rd time lucky if not.
Hi everyone else x

Tryingno1 · 27/07/2015 20:49

Hi Tina.
I had no se at all! Was fine on it. I didn't get preg but that's due to another issue with DH.
Usually the side effects u mention are when ur on it long term like a few weeks/months.
Some of the ladies on here have had their cycle go wonky on it! I hope ur ok on it!

Tina84 · 27/07/2015 20:38

Hi all,

Looks like a lot of DR Shehatas patience on this thread and you ladies are much further along than I am. I'm on my first month of trying, just started my first pack of prednisolon and panicking a little as I've been reading horror stories about lack of sleep, weight gain and joint problems. Can I ask how quickly did you get pregnant once on the treatment? What are your experiences with prednisolon and the rest of the medications?

Seekingmiracles · 27/07/2015 19:30

Thanks Snoopy Smile I know it's not all bad. And really right now I'm not worrying too much. I know there is a way round it. To be honest I'm just relieved the treatment stopped me miscarrying so I have faith that it will work. I have to just accept the rest I guess.

Snoopysimaginaryfriend · 27/07/2015 18:45

hula how annoying. Hopefully you caught the egg/s though. Would it be possible to have the scan earlier next cycle if needed? Sorry, I'm so ignorant when it come to this super ovulation stuff.

seeking I know it's very hard but please try not to worry until you have all the information. I have a friend who had two girls with his wife and then she had a surprise third pregnancy. Despite a normal pregnancy his son almost died within twenty four hours of birth and tests revealed both he and his wife had balanced translocations. And yet they have two healthy girls and didn't have any idea there was anything wrong. I know this story is a bit doom and gloom but even with their complications they have had children.

sunnyday01 · 27/07/2015 16:54

Oh hula that is so frustrating, will be interesting to see what Dr s says. I had to go on day 11 at the latest as I had a few months where they said I had I e ready to pop!

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Tryingno1 · 27/07/2015 16:11

oh i see seeking, i have everything crossed that it was a rare one off thing.....im sorry i know what it feels like to think u have maybe hit a brick wall and don't know where to go from. BUT we all always think worst case....and usually its not WORST case, it just means a change of plan...i don't know if that makes sense!

but when dh sperm was low i went into google frenzy mode and found stories of men needing surgery to extract sperm and there not being any there and it was TOTALLY not needed and worried me for no reason...i automatically jumped to worst case scenario and panicked HUGELY....its hard not to google! but before u have all the facts keep everything crossed. well I'm crossing them for u.....:)

Hula2 · 27/07/2015 16:03

Gosh Seeking sounds scary but i d try and stay away from dreaded google if u can until u have your results as u may be putting yourself thru unnecessary worry. Sending Hugs, the uncertainty must be horrible.

Hula2 · 27/07/2015 15:29

Thanks Trying - yep i think i must ov pretty soon after and at least we did dtd yesterday so prob was pretty well timed, dh will get an easy month this month ! I knew it would be tight to try and stretch scan to day 12 but with the weekend and work i had no choice. I would think the argc would be able to help your lining with such close monitoring, i think you can have oestrogen patches if your levels are low.

Seekingmiracles · 27/07/2015 15:26

Oh that's crap Hula Hmm Hopefully though you've done enough to have caught the egg(s) any way. Rubbish that you won't know wether this dosage is corrector not though.

I know that if either of us are carriers of a translocation it doesn't necessarily mean that we're 100% out, but the issue the baby had was so rare -unbalanced robertsonian translocation with the same chromosome. Normally it's between 2 different ones. There are rare cases when carriers have both chromosomes fused which essentially means they will never produce 'normal' babies.
If either of us has a balanced translocation it means theoretically there's a 1/6 chance of normal pregnancy, 1/6 chance of same balanced translocation and 4/6 chance of chromosomal defect. It's scary!! Google is a scary place at times!

Tryingno1 · 27/07/2015 15:14

oh hula I'm sorry, u tend to be a quick ovulator when u get ur positive lh stick don't u?....hopefully 2 eggs came out and at least u DTD the other day....im sorry, will maybe take a few cycles to get things perfectly timed???.great ion the lining i only ever get to 7mm (more often 6) which i think is a problem I'm hoping argc addresses.....