Immune/NK issues - aka Pred Thread no. 22!

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

Hi everyone,

I said hello a while ago and have been lurking ever since! I wondered if you could answer a question - for those who have become pregnant whilst on prednisone for high levels of NK cell activation, when did you stop taking the prednisone? Is it around 12 weeks?

I'm really nervous about coming off it in a couple of weeks time :-(

Hi @Cream123, is gcfs the expensive injection? If so he suggested it for me after a second loss on the programme but I chose to carry on with the pred and Hydroxy. I couldn’t find anyone else who had been on it at the time.
From memory it was 1 injection a month (£80) and then after positive test, an injection every 3 days for quite a long time which seemed to work out at £25 pr day.

@redpandafluff on Mr Shehata’s programme you wean off from 12 weeks by 5 mg every 4 days (from 25mg - 20mg - 15mg etc)

Thanks @DaniMERL - and that's even where it has been confirmed that you have high NK cell activation? So there's no danger the immune system would attack the foetus after 12 weeks?

Sorry for the questions - I had the test abroad and now I'm having a hard time getting further details on the implications :-(

@RedPandaFluff I can't quite find where it was discussed but a few of the ladies were discussing it in the last month or so (around when 12 weeks actually was because LMP doesn't mean much if you know the exact date of conception etc.) But I think the science is that the foetus is strong enough after 12 weeks that the NK cells are no longer a threat. Which is great news for you and panda cub (is that right?!); kick the killer cells' ass! Still terrifying of course.

Best wishes to you x

Panda cub 😁 love it!

I guessed it would be something along those lines but I've googled so much my head is spinning. I found a lot of women saying they stayed on it right through the second and into the third trimester so naturally that made me panic.

Thank you!

Hello ladies, I’m back with a new bfp yesterday and have started the progesterone and prednisone again, fingers crossed that it’s a better genetic mix than the chemical I had in January. Life got very busy and I was having a bit of a blues thinking it’ll never happen now I’m 41.5 but it has again. So lovely to see some of you ladies have got pregnancies that are going well since I was last here and looking forward to getting to know everyone who’s joined since I disappeared. I’m quite crampy but guess that’s normal for early days and am on a constant knicker watch, don’t think I’ll relax one moment. Xxx

@Widdendream77 congratulations on your lovely news. I'm still stalking this board in spite of mainly hanging out on the IVF one these days (thank you departed father of my angel babies ) but hope to be able to share good news with you all soon.

Hoping everyone else is doing well x

@Widdendream77 congratulations on your bfp!
I had my 7 week reassurance scan Thursday afternoon (30/05), was terrified but all was looking well, and was further than we'd ever got. The subchorionic haematoma had also shrunk thankfully and have had no more bleeding. Had been feeling slightly nauseous on and off last week but not much yesterday so started to worry again and now really worried. I know the pred masks symptoms but still concerned, has anyone had this mild on and off nausea on the pred? X

Hello everyone!! Congratulations to all the ladies who have their pregnancies confirmed.
haven't been here for a while, lots of delays on my FET treatment due to various reasons and finally gonna start next month.
@Cream123 - I ll be taking G-CSF too in this cycle if all goes well along with hydroxychloroquine. Its been prescribed my Mr.S after i failed on pred. When r u going to start?
@ DaniMERL - how did u get on with pred and hydroxy? Sorry i couldnt catchup with the previous pages in this thread. I m fully dependent on hydroxy and gcsf this cycle, hoping it gives some good news to me. havent got anything else to try, so this will be my last attempt. I was very hesitant as well at first to take g-csf, then a lady who was in this thread sometime back messaged me that she also took g-csf and got a successful pregnancy (though she didnt continue it fully for some reasons). But however i have now decided to give it a try. Lets see how i ll get on with it.
@Chilliandlime - i m sure its the pred thats masking your symptoms and nothing to worry about..i know its easy for me to say!!
Good luck to all who are trying!!

Hiya
I’m new to steroid treatment after 6 early miscarriages over 3.5 years (all before 8 weeks). Tried lots of things including Coventry scratches, and steroids at positive pregnancy test, before seeing Mr S.

Currently 5 weeks 5 days pregnant on complex plan with mr S. This is our danger zone time so very nervy!!!

Hello, just thought I’d drop in and say hi. Had my first baby on the complex plan with Mr Shehata last year and coming back again for round 2! Congrats to all of you who are currently pregnant and good luck to everyone else!

Hi @HarrietM87 thanks for posting really good to hear a good news story, it’s hard to imagine things going well but really hopeful! Was it your first try with his plan? When we first saw him he spoke about planning our second and I was like let’s just get one a minute

Hi @Lau2019 yes I was very lucky. I’d had 3 mcs before I saw him. I conceived my baby on my second month on pred and it was smooth sailing from there. Firmly believe wouldn’t have him without Mr Shehata. It feels weird to be trying all over again but slowly getting used to the idea!

That’s really hopeful to hear. Hopefully I’ll be telling the same story soon. Good luck with your second x

@HarrietM87 Congratulations, thats a wonderful news.. very glad to hear a positive story.
@Lau2019 congratulations to you too..Fingers crossed.. hope all goes well..i m almost same as u, saw Mr.S after 6 miscarriages..Unfortunately failed on his complex plan, so taking hCQ and g-csf this time..

@hopeful07 thanks for your message. So sorry to hear it didn’t work for you. It’s such a slog isn’t it. Fingers crossed the extra potions make the difference.

Mine all follow a really similar pattern so can I ask was the m/c on the plan exactly the same or was it different? Did u get to find out the cause (eg if it was a chromosomally normal baby)? sending lots positivity x

@Lau2019 yes the miscarriage was almost same as the previous ones, didnt get past the 7 week mark but saw a heartbeat. That said once i had the same in one of my previous pregnancies miscarried with the heartbeat..And this one is a chromosomally normal one. So Mr.S has put down all to immunes. Jus praying the hCQ works out for me..

Hi all,
I had a scan with Mr S today and am measuring 11+1. This is on the pred and hydroxy. All looking good x

@DaniMERL hurrah! So happy for you! You've come so far! Update from me: I'm full of drugs and waiting for egg collection and then embryo transfer (hopefully!) I'm already on the intralipids in line with the protocol at my IVF clinic.

How is everyone else doing?

@kittykatsmile thank you :)
Good luck with your next step xx

Hi all,

Back again. I remember some of you from a while back. I've just had my fourth loss and have had my results from Dr S. My NK count is normal but my activation marker is high. I'm starting the Hydroxy but as it takes 8 weeks to kick in, I'm going to try this cycle on Prednisolone.

I'm also having Fragmin, Aspirin, Cyclogest and the pre-natals, plus 5mg folate cos I have the MTHFR mutation.

Cycle not back since last MC but hoping to TTC in the next few weeks!

So happy to see this thread continuing, it's been a lifeline!

@Hopeful07- thanks for sharing. It’s sound like Mr S hypothesis is a good one and good (not good but u know what I mean) that you were able to find out that it was chromosomally ok. The heartbeat thing is so hard we have had 3 pregnancies with heartbeats at 6 weeks and 2 of the ones we didn’t, were because we chose not to have 6 week scans. Mr S is not available much these next few weeks and I am away for a few days so he can’t fit me in until 8 weeks for a scan so deciding whether to get a scan at 7 weeks at my nhs clinic just to see what is going on in there.....

@lau2019 I had similar issues and didn’t want to pay a fortune to not even see Mr S. I just told them I was away in the end and had some scans at EPU but also would have paid for a local private scan if that hadn’t been possible. At least I could save a bit of money! So the first time I saw him was the 8 week scan when I was nearly 9 weeks and had to have intralipids then so felt more worthwhile.

@DaniMERL congrats, so happy for u!! Feeling more confident that hCQ ll do the trick for me too..
@Lau2019 yes its always hard to decide about these early scans..but i m bit impatient everytime and wanted to know whats going on, so had it around 6 weeks in each of my pregnancies..