Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

[Seekingmiracles]

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies!

Although I now have brown spotting/discharge this morning. Like my body is reminding me not to get too excited :(

Hi all,

I started Prednisolone in March after 2 MCs. I don't have anti phospholipid but I do have CAH which can raise MC risk and for which the treatment is Prednisolone anyway. First two cycles I didn't get any positive OPKs and had too many bleeds! This cycle I ovulated and no bleed for nearly a month (a few days dpo now).

What I have found this time with Pred is I haven't gained weight like last time I took it (for another issue caused by my CAH). This is obvs great news. I have been keeping my salt intake low and my potassium intake high as I read this really helps counter the weight loss. Also cutting out bread and exercising more. It's such a relief as I was terrified of ballooning again. No puffy face either!

Pickled, spotting in itself isn't a worry so try to stay calm. Easier said than done, I know! If you're still on Pred it can cause all sorts of weird symptoms. Fingers crossed it's all fine.

Really hope all is ok pickled! As poppy said try not to worry, but I know that's impossible to do. Sending lots of positive vibes.

Thanks for your tips poppy, I am struggling to keep my weight stable on the pred. Always comfort eat when down so it's a vicious cycle.

Hope you're getting on ok on your treatment plan Harriet.

Good to hear your advice sunny.

Feeling down here as my cycles are getting shorter (22 days this month, 12 day luteal phase). it feels a bit like my body is telling me it's all too late. Does anyone else have shorter cycles or has anyone with access stories had shorter cycles?

Starshine, 12 day luteal phase is good and 22 days not unheard of. Why too late? My cycles on Pred have been very erratic and sometimes those extra bleeds are not true periods just hormone changes. I'd never read anything fundamental into what's happening on Pred, unless to conclude perhaps the meds need tweaking or stopping.

pickled don't despair! I had a bit more than brown spotting with this one, even a little red. Try to stay positive

Thank you all, it seems to have stopped now. It's a little disconcerting but extensive googling and you guys tell me it's ok - it's also when my period would have been due so hopefully it's just that. I'm so glad I only saw them yesterday, would be much more worried if not!

@Starshine I always thought shorter cycles means more chances to get pregnant? Try to stay positive xxx

Hello everyone. Thanks for the replies - only just seen as I've had a really busy time at work. Huge congrats to yomping and to pickled on your lovely scan!

I haven't started the pred yet. Got my first AF after MC at the weekend (first since January as had 2 mcs back to back). So relieved! CD5 today and just spotting. I usually ovulate late - cd 18-20 - so have another week before FW but going to try EOD and really go for it this cycle.

I saw my NHS consultant this morning and it really upset me - she totally rubbished the NK cells theory and use of steroids, told me my 3 losses were just bad luck and to just keep trying. I ended up crying to her saying I just can't go through this again. Now feeling nervous about the treatment plan but still definitely going to try it as I just want to feel like I'be done everything I can.

Ps starshine I obv haven't had success yet, but I have a 12 day luteal phase. All the advice I've had is that as long as it's at least 10 days you're ok.

Harriet sorry to hear about your MCs, especially back to back, it really prolongs the emotional recover doesn't it? Annoying you've had discouraging info from doc. Try to look at its this way: if your doc is right and the MCs were bad luck, you are statically due a break. If she's wrong and the meds do work, you have a much better chance next time.

I had an MC (I think a CP really) in late Nov then got pregnant again 3.5 weeks later and had an MMC at nearly 6 weeks. It's so rubbish! Also hoping it was bad luck and the next one will stick.

Good on us for getting back out there. It's only a matter of time for most women x

Oh pickled- good news! Look after yourself.

Harriet- a friend of mine is an obstetrician and he doesn't believe in the steroid management but completely understand why I am trying it. Just think in maternal medicine it's so hard to test anything, especially with miscarriages and in the short term, little harm in trying this. We'd all try anything to get there.

Think I am just worried about shortening cycle and egg health as am almost 37, but your comments have made me feel a little better- yes the positive is less time to wait. Seeing mr s in two weeks so will discuss with him as you're right poppy- it might be an effect of the Pred?

That's how we have to keeping thinking - that it's only a matter of time! I like that motto poppy!
X

37! You're fine! Do you know that the National Institute of Clinical Excellence updated its guidance a couple of years ago and cited 39 not 35 as the point at which on average fertility decline. That's bought us all 4 years however old we are! I'm 35 and had an ovarian reserve scare in Jan after my MMC when a wanker fertility doc gave the pill to pass it and added "oh by the way your ovaries look small and very old for your age, don't wait three months to TTC again." This was 2 days before my 35th bday, I cried myself to sleep two nights running and it turned out to be rubbish! At my follow up scan the midwives said it was utter bunk and my ovaries looked "beautiful and full of follicles" and that 35 is a baby because they had a 50 year old a few weeks previously naturally pregnant and most of their mums to be are over 35. Then I also got confirmed by AMH blood test as having excellent ovarian reserve for my age. All that crying and depression for nothing! The biological clock botherers are the worst. I don't mean any of this insensitively to anyone who has had age related problems, of course it happens, but the fact is scare mongering has got out of hand x

Thanks poppy. Can't believe a dr said that to you - how terrible! And the scaremongering about age is also so pointless - it's not like we can do anything about that. My consultant today tried to tell me I'd had 3 mcs in a row probably because of my egg quality. I'm 30 ffs. The stuff about fertility declining at 35 is totally wrong and based on a study that's like 200 years old.

Thanks poppy- I didn't know it was 39 and honestly do keep thinking I am over 35, it is my egg quality! Just puts all extra stress and worry on us!

Can't believe that said that to you Harriet! Drs and people just don't think about the impact of what they say sometimes at all!

Harriet, yeah there are some nasty pieces out there! Also found out he presided over a scandal in 2003 where two women were given each other's embryos due IVF transfer. Can you imagine? Terrible. I'm glad you've read similar info too on the centuries old stats! That and the NICE guidelines thing were reported in the BBC and even the Mail about 3 years ago but no one seems to reference them these days, they revert back to th scaremongering. Yeah you are unlikely to have age related problems as just 30! It's just an easy thing to tell us and make us beat ourselves up.

Starshine, sorry missed you message before mine. Yes Pred effect would be my first thought. I've honestly had periods one week on one week off while on it! Doesn't help that it makes it very difficult to identify fertile window.

In no particular order :

Luteal phase can be all sorts of lengths and frankly isn't that important. What is important is the thickness of your lining by the time you ovulate and how thick it gets from then onwards, but everyone starts with different thicknesses and have different rates of growth. I guess for a chunk of society if you have a decent length luteal phase it goes hand in hand that the thickness is good but not always like that. A scan can show your thickness. I know 2 people who struggled with this. One followed online tips to thicken hers, took a variety of supplements, ate 2 eggs every day and was necking back a particular type of cough medicine all the time and it worked for her. The other is still trying but she's only had one BFP since trying treatment for NK cells that are v active, and that was a v early loss so could have had genetic issues.

Re age, I had ds2 just before I turned 36, then had 12 MC's until just before I turned 40. First BFP on steroids stuck and our baby girl is set to arrive a few days after my 41st. I've fallen pregnant every time of trying bar 2 months when took progesterone from 7dpo. I really don't think fertility crashes as much as they all think, unless I'm abnormal lol!! Suppose my periods didn't start until i was 16 which might buy me some time. I know lots from a RMC that have had babies at 39+ and one just gave birth and she is 45! Natural BFP, again had high NK's and intralipids worked for her. And Mr Shehata said if she wants a third child, to ttc within the next 6 months as time almost not on her side, which would suggest he thinks 45-46 is where it actually nosedives, not the traditional 35.

Wow, Loopy that is all fantastic info. I heard a myth that the luteal phase is always fixed but mine definitely fluctuates by at least a couple of days every cycle. Also heard eggs are great when TTC.

With you on the age thing. Lots of 40+ babies among the older women In my family history, including those 3 gens ago who literally had babies until they couldn't anymore. As Harriet pointed out, the stats on th over 35 thing are from a centuries old study when the life expectancy was about 40 and most of the women over 35 were widowed or desperately trying to avoid having ever more kids.

pickled any updates? How are you feeling?

Yes pickled how are you? And you snoopy?

I'm cd8 today. Not expecting to ovulate until around cd19 so still at least 5 days until FW - I'm raring to go! I've always conceived first time so foolishly hoping and expecting for that to happen again.

Does anyone eat/drink/take anything for egg quality/ thick linings etc?

Good luck Harriet! I am Day cd 5- have everything crossed this is the month! I don't have any wonder foods to suggest, just trying to follow a healthy plan, including lots of protein rich foods.

Yes how are you pickled and snoopy?

Sorry I couldnt post here for a while due to other personal issues to deal with..
Thanks pickled and jaffacakes for ur reply..
I havent started my FET cycle yet, its all delayed now as my recent cytogenetic report has come up with a chromosomal abnormality :(
So thinking on the PGS route.. feeling very sad as not sure of its timelines..
Also hav other queries running on my mind..Like Should I inform this to Dr.S? Will he have any other advice on this? I m thinking that the reason is now chromosomal, will pred help me in my next pregnancy? So confused about all this!!

And good to hear on the age thing..I was so worried, i m turning 35 in a couple of months and wondering how it ll affect my egg quality..

Hope everyone else is doing good..

Good to have a cycle buddy starshine! When will you be testing? I think it will be around 26th June for me depending on when I ovulate.

hopeful sorry to hear things haven't been good. I don't really have any advice (what is a FET cycle?) but I'd have thought that if your last mc was caused by a chromosomal issue then it was likely just an unfortunate random event, and there's every reason pred could help a chromosomally normal pregnancy next time, but definitely worth running past mr S.

I think around 26th June too Harriet, but my cycle seems to change a lot, this month was really short, so could change. Just trying to continue being super healthy!!!

Hopeful as Harriet has said, I think if it's chromosomal, often the hey do say it's a random event and hopefully it shouldn't happen again- but am no expert. Reckon it's definitely worth discussing with mr s.

I was reading through some older threads on here earlier again and it really is lovely to hear so many success stories. I hope for the ladies that haven't been on for a while that they are doing ok too

Re egg quality I took coq 10 and NAC and omega 3, also took vitamin D. Also heard clomid can improve egg quality. Others I know took l'arginine for their lining and some took DHEA but I didn't as I have polycystic ovaries and it's not safe for me to take it.

Thanks harrietm and starshine, i ll mention it to Mr.S and wait for his advice.And yes i too sometimes think its a random one but have had 6 miscarriages so far without any reasons..my NK cells were ok too just the function s high, so Mr.S prescribed pred this time..
harrietm - i m on an IVF cycle, its a frozen embryo transfer (FET).. my last cycle with NHS..But my hospital do not look at immunes, so went to Mr.S as i have an history of recurrent miscarriages..

Good luck with ur cycles harrietm and starshine..

Hi loopy - thats very informative on the supplements to improve egg quality..

Hi everyone! @harriet & @poppy I can't believe how insensitive your doctors have been. I honestly think a lot of them don't have a clue what they're talking about.

Thanks for checking in, I'm doing well. I had another tiny bit of spotting when I wiped on Sunday but it was tiny so I'm just going to stay positive. I've never had it before so I'm just thinking maybe this is what my body does in a healthy pregnancy.

Wishing you all lots of positivity and luck for this cycle xx