Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

Thanks ladies, I know we've all been there more times than anyone ever should. @Chickjen thanks, my local
EPU aren't doing any scans but have agreed to scan me seeing as I'm on dalteprin. I know that can make the bleeding worse. It was heavy bleeding and a couple of large bits of clot/ tissue. I had to fish them out the loo which is horrible but if there's a chance they can test then that's good. I didn't have any cramping but my uterus feel quite achy today. But I can always hope for a miracle. Just so odd as HCG was high and seeing HB just yesterday. Hope you are doing well with your little one.

@KtAgs really glad to hear your scan went well and others too. So nice to have positive news. X

@Eeviee So glad you're able to go to the EPU. Sending lots of love and hope you're ok x

@Eeviee so glad you can get scanned, as you say it just seems odd seeing as everything looked so good in the morning. I have dug out the name of the drug Mr S prescribed me just in case it can help. Nifedipine. Apparently it is what they would usually give at the end of pregnancy if it looks like someone is going into preterm labour, it helps stop the uterus cramping. I have everything crossed for you xx

@Eeviee sending lots of love and crossing my fingers there’s another explanation for the bleeding 🤞🏽

Just catching up, congratulations on all of the new BFPs and positive scans ❤️

@Lalaifa I use Ovusense and have done for the last 18 cycles 🙈 I find it really easy to use but I would say unless you learn to read the patterns in your temperature you can’t really anticipate ovulation (like you would see your LH surge on the ovulation strips) and it usually confirms ovulation 3-5 days after the fact so there has been the occasional month that I’ve started my meds late because I didn’t realise I’d ovulated already. I like that it gives you an exact date you did ovulate though and you can see if your temp stays high afterwards. Although some months I find it all too much to keep temping after ovulation, looking at every dip and rise and trying to second guess what it means 🙈 xx

I'm pleased they are seeing you @Eeviee. I hope that it isn't that you've lost the baby. I hope you're OK x

I just manually temp @Wishing5tar but I can relate to the scrutinising of your chart to see if it means anything. I've restarted temping again just to see what's going on as I've had some spotting but not near ovulation yet.

I've just seen your message @LookingforAnswers86 I've done lots of reading too! I'll probably get a telling off! 😂 🙊 How come you've got to go back for your blood tests? I was hoping it would all be done on the same day. When I booked, they booked my follow up for 2 weeks later.

@Jellystar23 🤞 for spontaneity!!

We had our blood karyotyping results back and all are normal. Still waiting for our results back from testing the baby but think that'll be a good few weeks yet.

Hi I have my first appointment with Dr Shehata next week is anyone on hydroxychloroquine and did you have to wait 8 weeks or could you take a loading dose? Thanks lauren

Hi @LaurenAB94 I’m on hydroxy and took a loading dose. I started it this autumn. I think he must do the loading dose with everyone as the standard print out plan you will receive sets out how the loading dose works. You can basically start straight away but he may ask you to wait as they may want to retest your bloods in two weeks’ time to see how you respond to treatment (and adjust it accordingly) - and it’s best not to attempt pregnancy whilst doing this trial. However I did tell him it was impossible for us not to try (I was desperate to get pregnant at the time, following another miscarriage)!! In the end we didn’t fall pregnant that time though and he did need to adjust the meds as it didn’t work for me (I had pred added to the mix). So best is to be guided by him and not be naughty like me ;) good luck! X

Hi @LaurenAB94. Good luck for your appointment, although I’m sorry you find yourself needing one!
I was put on hydroxychloroquine at my first appointment, loading dose for two days then maintenance dose. This was 4 weeks ago. When I saw him two weeks later, he was happy for my to start ttc. However, I think every plan is different so not guaranteed that it will be the same.

Sorry @laurenAB94 am tired - I actually started it earlier this summer, then took a break from trying in August (which was great), then started up again with another loading dose (plus pred this time) this autumn. Anyway good luck with it x

@Rebecca9876 thank you so much for you information I’m so keen to try again straight away but I know I’ve read some people say they had to wait 8 weeks which feels like such a long time I know it isn’t. I’m sorry your on the same path following miscarriages I’ve had 4 and I’m 26 and husband 30

@Jellystar23 thank you I have an appointment with him 3 weeks after for my results. I’ve had a lot of tests done already but not sure how COVID will effect it as I don’t think he’s using preds at the moment and is just using hydroxychloroquine I’m so sorry your in the same position as me with having miscarriages.

@Eeviee uck it sounds like a rollercoaster few days. Mind yourself. Fingers crossed the scan brings some good news x

@VenusStarr I did get my bloods done the day of the appointment :) it's just my follow up next week to discuss results and hopefully a plan of action! Good luck tomorrow!

@LaurenAB94 Welcome to the forum! Not one I wished to be on but it really is so nice to be able to talk to people in the same boat and exchange thoughts and concerns....and hear success stories :)

Thank you so much.
It’s really nice to speak to people going through the same problems.
A brief background on me
I’m Lauren I’m aged 26 husband 30. We have no living children, we’ve had 3 chemical pregnancies ending at 6 weeks and 1 missed miscarriage baby stopped growing at 6weeks but didn’t miscarry till 11weeks had a D&C. We’ve been TTC for 2.5years and had 4 miscarriages.
Hormone bloods normal , ultrasound normal, clotting bloods normal , lupus antibodies normal ,
Antinuclear antibodies positive but NHS won’t treat it
I have my first appointment with Dr S on 12/11/2020 I really hope he can give me something to treat the positive ANA at my first appointment while we wait for the rest of the results I know it says on his website if it’s positive he will treat with preds, he might not do this now due to COVID.

I wish anyone on this journey good luck

No good news form me - my scan today showed no heartbeat and a massive hematoma on the other side of the uterus. She said 'I'm just going to check the hb we saw yesterday is still there' but I knew in my heart it wouldn't be 😢 They were surprised as no bleed was visible on yesterday's scan. So I'm back in hospital again overnight being monitored, because I'm on clexane and they're worried about too much bleeding. Gutted. Is anyone else
on clexane? X

@LaurenAB94 I started hydroxy back in May after my last loss, I took for 8 weeks before ttc but believe he normally just gives loading dose as it's as effective. X

Oh @Eeviee I am so so sorry ❤️ I'm heartbroken for you. I've not used clexane before but hopefully one of the others will have some insight. I'm sorry you've got to stay in too. Did you have to be scanned alone? Sending you lots of love x

Hi @LaurenAB94, I'm sorry you find yourself here. This group has been really helpful for me x

@LookingforAnswers86 I think I must've misread your other post. I'll let you know how tomorrow goes.

@Eeviee @VenusStarr thankyou

@Eeviee I'm so sorry to hear this. Please take care of yourself. I was sad the entire day thinking about what you must be going through. Lots of love xx
@LaurenAB94 Welcome to the group! I also took a loading dose of hydroxy back in September and started trying in the following cycle straightaway. I also had ANA positive on the NHS, but came back negative on Shehata's test for some reason. I think they take low titres as a negative. Anyway, I also had very high NK cells so need to take hydroxy plus ovulation intralipids. I dont know if that is strong enough for this stubborn NKs tho...
@VenusStarr let us know how your appointment goes.

I'm in my 2ww now, not very hopeful this time tho. Must be the prospect of the lockdown looming in the horizon. I hope everyone else is doing ok.

@Lalaifa
Thanks so much for all the info mine is +100 low titre positive homogeneous pattern. It's a shame they don't count the low titre positives.
I just want to start some form of treatment anyway

Did they give you superovulation if your having to take intralipids from ovulation as if you TTC naturally and it doesn't happen quickly that could be costly?
I'm keen to try super ovulation because I don't want to be TTC for ages
Xx

@Eeviee so sorry to hear bad news :(

I was on clexane for my last MC. I had a bleed at 5 weeks and stopped taking it for a day because I was worried it would make it worse. I had a scan and they could see an area where the blood was coming from/ it looked like a haematoma but hospital told me not to worry and to continue using it so I did....they said very small amounts would not have much affect - I was only taking 25mg...(then a scan a week later showed no haematona so god knows who was right 🤨 )

PS I am not sure I would take the advice of an Irish hospital...but I have to follow something 😂😂🙂

I'm so sorry @Eeviee. I hope the bleeding stops soon. Its so unfair. Sending you so much love.

Welcome @LaurenAB94 but sorry you find yourself here at all. I also have a positive ANA as well as high NK cells generally, as well as very high in pregnancy. I'm currently 11w3 pregnant and was put on hydroxy and went for ovulation intralipids instead of prednisone.

This group is very helpful and has been a bit of a lifeline for me. I hope your appointment with Dr as goes well.

Xx

@KtAgs thank you for the information. That sounds really good. I suppose i will have to wait for the NK test results. How long did you have to take the hydroxychloroquine for before ttc? I'm a bit worried about finances if I have to take intralipid from ovulation as it took me 14months to conceive the first time.
I know with COVID preds aren't ideal as they make you immunosuprressed but at this point I would try anything. It's just over 3 hours for me
To get to the clinic. Do you just have to go once every 4 weeks for the intralipids from
Ovulation?

Thanks for your help everyone xx

@KtAgs congratulations on your pregnancy too xx

@LaurenAB94 We got our results when 1st lockdown began so we weren't allowed to try. I then missed the message about loading and just took it normally and decided to try anyway. Took me four cycles to conceive.

I'm about 45 mins away from epsom and conceived the first month I tried after ovulation intralipids. The steroids were not my friend.

For my ANA my titre was 1:320 so medium. I saw a rheumatologist after getting those results because I had no idea I had that ANA. I didn't have lupus but the rheumatologist said I may develop an autoimmune disease as I age. Xx