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

[Determined123]

Hey Hula, yes I got AF on day 53 which has never happened before. I believe it's because I took it before OV and for 14 days. Louise said they used to give it to women for 14 days before but it messed their cycles up to much. The last time I had a wonky cycle that wasn't an mc was when I think I took it too close before OV and I hadn't actually ovd yet. After which I always left it 2 days and was always ok. My last cycles lp was only 4 days (took 49 days to OV!) so I am grateful of a little extension by a few days!

I tried reflex, acu, high vit c, everything but as I hadn't ovd nothing really worked until then :(

It's so pants you guys cycles have gone wonky, it just feels like another thing to bloody manage on top of it all. I just keep myself busy and eventually my body did what it needed to but I did have a couple meltdowns! I'm cd 13 and prob still a week away from Ov still looks like it is so again for me next cycle! Gulp!!!

Hula-I don't remember my cycles being messed up when I did so I think there drugs were powerful and overrides it. My prob is sluggish Ov really, once that happens am generally ok.

Snoopy Do you have any cyclogest? Dr S said you can use that to induce a bleed if it goes too long...(I held off in the end) so couldn't tell you how long to do it for but maybe worth asking!!

Am away at mums and it's so hot! So needed the break as been super busy lately waves to all xx

[Snoopysimaginaryfriend]

My period arrived last night! Never been so happy to see it haha

Cd46 when I usually have a 33 day cycle

I think the steroids delayed ovulation for me because I got the positive opk as soon as I stopped them and now af exactly two weeks after positive opk.

But now my next af is due right in the middle of our holiday and just in time for my thirtieth how crappy.

hula how many rounds of so have you tried? It must be so hard knowing what to do for the best but I still think you've got such a good chance if you decide to keep going.

SO does sound interesting to me. I know this ha only been one cycle on pred but I've always been paranoid I don't ovulate (although the proof I do is in the three mc )

determined has Dr s suggested any alternatives for you?

[Tryingno1]

hey guys sorry about ur cycles, how annoying

i always took my pred 2 days after my first positive lh surge so i was sure it was after ovulation and always stopped 10dpo, sometimes 9po when i felt i wasn't preg......i was on it for about 5 months and my cycles were from 25-29...it was told that post MC you cycles can take 4-6 months to sort out....also every time u get preg, ur cycles can permantley change (I've been a 29 day girl for 20 years! then after 1 st miscarriage and NO PRED i was more a 26/27 girl!) ..so don't know if any of you are seeing a change thats just due to the pregnancy rather than pred? either way its a right pain!

maybe delay when you take the red until your sure u ovulated?

hula I'm sure SO will override any red effects as the trigger forces the egg out regardless of anything else....

glad it finally came determined and snoopy.
x

[Seekingmiracles]

Hey ladies!
Sorry to see so many of you are have issues with your cycle!!
It looks like I'm about to come on ... Only10 or 11dpo I think! Which mean my lip is only 9/10days! Pissed off! Not only is miscarriage heartbreaking it the continues to fuck with your cycles meaning getting pregnant again is an issue! FFS!
Christ know what my cycle will be like with pred next cycle!!

Sorry I've been AWOL! Been busy with puppy. I hope you're all ok(aside from bfns and wonky cycles). Xx

[Snoopysimaginaryfriend]

I'm going to try and remain hopeful and believe I just started the pred too early so it delayed ovulation. I didn't really want to do tests on holiday but I guess it's not that big a deal in the grand scheme. Really hope the even longer cycles are not here to stay.

seeking how is little loki? I've heard b vits can extend your luteal phase but not sure which ones/ dosage etc.

trying how are you? Hope you're feeling a bit better

[Drttc]

Hello everyone!

Snoopy- fingers crossed that was just a one off and cycles will go back to normal now!

Seeking- yay glad you're enjoying puppy life! Do you feel ready to try again?

Trying - Yes I think being pregnant may alter cycle length as well! But when Pred messes it up it feels different... Symptoms at the wrong time of month and not quite feeling right. How are things with you?

Determined- Lovely that you've been able to have a break. Not sure if you said but where is your mum's?

Hula - sorry about the bfn :( It really really sucks seeing that stupid negative test. Sounds like SO does have promising results though...


As for me- AF did end up coming on with a fury! Was glad to have it but boy did I feel awful!! Also, I use clearblue digital to monitor ovulation and I've always made sure to start Pred a few days after I ovulate (to be safe)... So anything that's happened hasn't been due to taking it early.

I've just tried my new beetroot (mixed with lemon juice) supply today and it is SO GROSS! Yuck yuck yuck. Drank it with my nose plugged and my mouth still sensed a deep funkiness in there... Will be drinking it for the next week though :-/ Oh and it looks like you're drinking blood!

Also, I've paid for karyotyping. My results will come within 2 weeks. Hubby takes his test on Sunday so his will be 2 weeks from then. Little by little I'm making sure to leave no stone unturned!

[Seekingmiracles]

Loki is such a cutie. Could easily stay cuddled up with him all day every day. He's being a bit of a terror with the cats but he's only a puppy, they just need to learn to stand their ground!
Yes - I'm ready to try again Drttc. although DH are going through a bit of a drought... If you get what I mean so that's gonna have to be dealt with! Haha!

Glad you're covering all bases. I feel so much more relived knowing that DH are fine chromosomally!

Generally my love is 12 days... I really hope this month was just a blip and it doesn't continue like that!!

[Seekingmiracles]

*lp is 12 days! Not love!! Dam iPhone!

[Lisachick1]

Hey
Glad you've all got your AFs ! This cycle messing is a right head fk on top of everything else. It's so ridiculously unfair.
I did just want to pop in with some good news though, I got a BFP on Sunday night!!!!! Had had the week from hell (crashed my car, lots of other crap things happened that I won't go into) so couldn't actually believe it (9dpo). I know I've not been in the chat much but wanted to let you all know (am 43 in a couple of months so there is hope for us who are a little older!!). Am terrified of course and am convinced the worst is going to happen again - it's the oddest feeling.
Gotta say I've been a bit upset as when I contacted Dr S office on Monday Louise was off sick and Dr S is on holiday so was pretty much told to wait until Louise was back in before there was anyone there that could tell me when I'd get my intralipids. I was in tears and freaking out and panicking! I normally miscarry around 5 weeks so was desperate to get them asap and thought more could be done considering my history (and how much it has us cost so far!) Basically the whole thing has been being delayed by 2 days and I'm unlikely to get them til the weekend, am hoping Friday (I'll be 4 weeks pg by thurs/fri). I finally spoke to Louise this afternoon and she did try to put my mind at rest and said as long as I have them at some point in first week it's fine but basically if it all goes wrong again really early on I'm always going to wonder if it was due to this delay.
Anyway, sorry to rant on, I know how lucky I am to be in the bfp position right now, but it's so bloody scary too I can't even put it into words.
if any of you did have the intralipids and you get a spare min please could you let me know how soon after your bfp you got them?!? Am freaking!!

Loki is soooo cute by the way Seeking!!!!!! X

[Snoopysimaginaryfriend]

Congratulation lisa, really hope this is the one for you!

[Drttc]

Congrats Lisa! I also really really hope this is your take home baby!

Sorry to hear you had a tough time arranging treatment. I know it can be so stressful and worrying trying to do everything right for your BFP!

When I got my BFP on treatment I did intralipids very early (3 weeks 3 days!)... It didn't work out for me but now Dr S has suggested I need an extra dose even before BFP. Looks like you're getting them pretty early too though so I wouldn't worry!

Need some opinions- I'm thinking about skipping the pre-ovulation intralipids this cycle. Mainly because I'm anticipating the Pred may have messed things up and it will be a waste of £300... But it's always a gamble isn't it! What do you all reckon? I'd still ttc...

[sunnyday01]

Just quickly popping in, sorry to hear so many of you are gp having issues with your cycles - fingers crossed it sorts itself out!

Lisa - congrats on your bfp! With my first BFP on the treatment I had intralipids at 15/16dpo I think - sadly I miscarried that one.thistime round I didn't test until I was 3 dats late ans dudnt have Intralipids for another week so was probably 5 weeks ish. Try not to worry too much - you're doing everything you can and taking all the meducation you can x

[Lisachick1]

Thanks so much guys, will keep you posted, will try not to worry. Didn't mean to sound negative about docs by the way, they've been amazing so far - I think I was just panicked and freaked out - just my luck for it to happen on the one day where Dr S and Louise both not there! X

[Seekingmiracles]

Congrats Lisa
I had intralipids, but I don't need to have them until 6/7 weeks so can't really offer much help. Remember you are on the pred so that will already be working to keep your imunes in check. Fingers crossed for you.

Not sure what to say Dr.... I know I'd kick myself if I did get a bfp and hadn't done the IL if I was in your position. BUT I also understand the not wanting to waste money. Tough one.

[Tryingno1]

Great news Lisa!fingers crossed we were due some good news on thread! Keep us posted.

Glad everyone af arrived, mine post mc is still awol....

[Rosa27]

Lisa- congrats! I was in exactly same position a a had to wait.. Had same emotions & concerns and also older (39). Had intralipids 20 or 22 dpo depending on if ov before SO ovitrelle injection or not (think I did). Anyway wanted to share to try reassure as I'm 22+4 today .. So far, so good. Best wishes.
Waves & hugs to all - been lurking and hoping for more good news. Glad some of the ongoing af challenges are resolving. Xxx

[Rosa27]

Meant only Cheryl was in office for few days. I called healthcare at home myself and paid and got everything set up so all they needed was the prescription to get it to me. So many variables we will never know what makes the difference but I understand wanting to control everything you can. Try not stress though as we all know that can't help. Fingers Xd :)

[Drttc]

Lisa- Let us know how you get on with the intralipids :)!

Hope everyone's having a lovely weekend!

It's so nice to just relax! Have decided to pass on pre-ovulation intralipids this month and just take a break from full on treatment. Will see how I feel about taking the steroids when the time comes. Last month was so rough that I'm giving myself a big pat on the back for getting through everything. I mean, we're trying to move mountains to make our dreams a reality... Go us for being so determined!

[Tryingno1]

Hey guys..

Hope ur all ok, DRtCC good idea to recharge.
At a christening gathering and everyone except us has kids and ive now been asked 5 times if we have them :( and why not?! Mind ur our buisness!

[Snoopysimaginaryfriend]

Hey everyone.

drttc having a break seems like a good idea, really recharge your batteries and enjoy the summer. I feel so much better knowing I don't have any appts or blood tests coming up this month. I'm worried about how I will cope with the NHS appt in sept because I feel so good now or even, not that I think it's likely, if I get pregnant

trying people are so rude aren't they. I'm beginning to realise how many people have had kids just because they think it's what they should be doing and I know a couple of women who have admitted that if they had their time again they probably wouldn't have children and more than a few who have admitted they are trapped in lives they do not enjoy because of their families.
I still want a baby more than anything but hearing things like that has made me realise I have to appreciate the good in my life because some of those rude, overly inquisitive people are just covering up for the regrets they have.

lisa hope you're doing well and got your treatment sorted and great to here from rosa, great inspiration and you are both evidence we should never give up.

[Drttc]

Trying, that sounds like a nightmare. Exactly what we don't need! Sorry you had to go through that... I don't know why people do it and I agree with snoopy that they're trying to detract from some sort of personal issue. This journey leads to a lot of self evaluation/reflection which I think makes us that little bit better at seeing these situations for what they really are.

Snoopy, agreed! Being forced to plan for treatment/testing makes it hard to relax. Trying to find the balance is something I'm really working on. I've stopped planning around my expectations, am enjoying today, while laying the groundwork for my hopes. So what in trying to say is: Go to these appointments, do your treatment, but enjoy today. Don't base happiness on what may or may not happen. Just thinking out loud :)

[Lisachick1]

Hope you're all doing ok, just a little update, so far so good had intralipids on Friday (at 4 weeks) and other than being a bit constipated (!) I am feeling ok. Am 4 weeks 4 days and terrified of next couple weeks as my losses are usually between 5-6 weeks. Scared of going to the loo. Work is going to be soooo busy and stressful for the next 3 months as well.... One day at a time I guess. Trying to stay positive though!

Thanks for all the good wishes, just though I'd let you know the latest.

X

[Seekingmiracles]

Very quiet here lately...must mean we're all too chilled to worry, which is good. Sending happy, chilled vibes out to everyone!
We're about to enter fertile period, so fingers crossed I guess. Don't think I'll be lucky enough for it to happen again so soon, but hoping.

Glad that so far everything is going well for you Lisa, stay positive and try not to let work get on top of you

[Hula2]

Evening Ladies,

Sorry been awol finally got back in after the hack and password reset stuff.

Lisa good to hear things are going well, keeping everything crossed for you.

Good luck Seeking, hope you get a quick bfp.

Hi to everyone else, hope you re all ok.

As for me, SO cycle 3, was felling pretty dejected and convinced it wouldn t have worked again but went for scan wed and had two mature follicles on the right (19 and 20mm) ! Mr S was very pleased. So triggered last night and going to try pred this cycle starting on saturday, keep your fingers crossed for me ladies.

[sunnyday01]

Hula - happy to hear round 3 looks to be more successful - let's hope this month is your month!

Glad things are progressing well so far Lisa, I just found taking it one day at a time was the way to cope. I was busy at work in the early days and found that helped get through the days!

Hope everyone else is ok!

I had my last appt with Dr s today, was a bit funny as never imagined what that would be like! He gave me a information sheet on what to do if we decide to have another!! I'm 17 weeks and 2 days, things feel like they are getting somewhere now after those long early weeks. Scan showed everything was ok today so hopefully that will continue! 20 week scan in 3 weeks. Also had an appt with cobsultant at local hospital as high risk due to mc and raised bmi - I'm going to be scanned at 28, 32 and 36 weeks to make sure all is ok which I'm happy with.