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

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?

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!

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

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

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!

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

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

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.

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

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?

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.

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.

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

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

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?

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.

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!

Hi Ladies,
Just collected the results of our chromosome analysis, it appears DH and I are both 'normal'. I'm so relieved. Have sent them to DrS for him to look at, in case they're not thorough enough.

Hope you're all having a good day.

I typically ovulate around day18/19 and my acupuncturist has been trying to bring it down! I'm happy to ovulate anywhere between cd13-16. I think left too long, eggs can deteriorate.

Hi ladies,
Something I wanted to share for insomnia as a result of pred, yoga! I love yoga and since trying and started pred, I was a bit cautious, because I know certain postures aren't good when trying to conceive and during pregnancy. I started doing pregnancy vyniasa flow and got a video by Tara Lee for pregnancy, it's has lots of amazing reviews. I slept like a baby for the last couple of nights and feel really refreshed, so thought share this experience with everyone, might work for you too.

hi guys

seeking what a HUGE relief! i hope they are comprehensive enough. sadly ur last pg was prob a one off rare thing....and ur on TX it will work next time. its just crappy that at ur age despite the tx nothing can be done for chromosomal problems......hope ur feeling better

tina and lisa welcome. hope u find being here useful! tina thats great to know, I've never done yoga but think i should start to help chill me out! is it good for people who have never done yoga and are not v flexible!!!

hula got my fingers crossed for u this cycle!

Seeking that is good news. Makes things look very positive for next time. Hope you're feeling better about the future now!

Tina- I've been wanting to try yoga for years! I'm just so stiff lol Will get around to it sometime though...

And yes Hula- hoping you've caught that egg/eggs!!

How's things with you Trying?

I'm just here, plodding through the tww! Only 6dpo... Can anyone remember when symptoms kick in? Is it always post implantation? I've had a headache and nausea today but thinking it may have been the Pred?

Great news seeking, another obstacle overcome!

Seeking - SOOOO relieved for you. Thats the trouble with all this is that even with immune issue etc treated we cant do anything about random chromosome probs cropping up but i d say this is very positive for tx working next time.

Thanks tina for yoga tips, i did a gym body balance class when ttc ds and found it very beneficial but its a bit harder to fit it in now but really should try something again, esp if it can ward off the insomnia. R u in your tww then ? Keeping fingers crossed for you.

Dr - don t think i ve ever had symptoms b4 10dpo but if ur on pred i basically don t think you can rely on any signs either way. Presume ur testing at 10 dpo ? Fingers crossed for a bfp.

Finally spoke to mr s about scan, he agreed looked like i d ov already and said if i thought that happened again to just cancel the scan. So 10mg again nxt mn and no later than day 10 scan. Did a temp this morning and was a very convincingly high post ov one so makes me also in the tww.

Thanks Ladies

So two of you in the tww....hope you're both lucky this month.
I'm ready for this cycle to be over again...not trying so just want it done and dusted. Only cd16 though so a while yet!

You're right Hula- I need to be patient! Well fc for you this month & at least now you have a plan in place for next cycle (if needed) that's less confusing. Are you testing 10dpo? I'm thinking I may do 9dpo as I got the FAINTEST + last time (almost couldn't see it)... Mainly because I'll be away this weekend and would rather know before the morning of the wedding (if possible)!

How's puppy life Seeking :) ?