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Immune/NK issues - aka Pred Thread no.20!

960 replies

harrietm87 · 18/07/2017 11:42

Hi all, thought I'd get the ball rolling on the new thread.

Welcome all with immune/natural killer cell issues.

It's been a while since a new thread so thought it might be helpful if we all added our stats:

I'm harriet, age 30, TTC#1.
3 mcs (2 at 5 weeks, 1 mmc at 9 weeks).
Hypothyroid and high NK cells.
Cycle 2 on pred!

OP posts:
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PoppyJ1 · 07/08/2017 16:14

JustLa this is wonderful news! I'm so happy for you. Less than two weeks til 12 weeks and your second trimester! Totally time to be thinking about buying outfits, etc. You will have a certified bump very soon! Do you know when will start announcing, or is that all a bit much at the moment?

So glad you're in good hands for the scans. Some of the NHS midwives and sonographers are just lovely. I have to say I am not normally bothered about the gender of doctors (my endo is a lovely man) but there is something about some of the NHS midwives that is so old school sisterly/matronly that really feels so safe and knowing. And they don't get half the credit they deserve for their experience.

LunaB · 07/08/2017 16:39

Cute Just - lovely and bubbly preggo cuteness 🤰 - I remember my 10 week scan with DS was my fave of all the scans as he suddenly looked like a baby, and was dancing about ❤️

Getting on the train - choo-choo - got to be super sweet and sexy for next 2 weeks in order to ensure I get the good stuff from DH on demand, in between toddler, work & puppy mayhem 😏

I'm curious about everybody's Big Reveal - will you do the classic FB scan photo? Or just tell your closest and let the world find out as you get bigger?

I did the big scan announcement for DS... and I loved every kind sweet comment left by my friends... but I won't do that this time... I might post a casual-posed/not-posed photo of myself in a cute jumper dress and (c)ankle boots walking the dog on a frosty morning... etc. And then await the acknowledgements to pour in 😂😂

You're right poppy, let's dress for the bumps we want, not for the bumps we have 😝💝

harrietm87 · 07/08/2017 17:21

Ha ha luna you are so funny!!!!!

Cankle boots lol - that's me for sure! I think I must have watched a film once when I was a kid where a couple are decorating a nursery, she has a big bump and is wearing an oversized shirt and leggings (prob from the 80s lol), and that's always been my dream preggo look and moment - pretty lame!

I won't do a fb reveal, will probably just tell people as and when I see them, if I ever get there. Still feels like a dream right now. So far only told my
mum and one friend (the only ones who know about my mcs).

Agree with you with the comforting NHS matrons poppy. So happy for you justla.

Hope drttc is ok, and starshine if you're still around.

OP posts:
Drttc · 07/08/2017 17:26

CONGRATS SNOOPY!!! What wonderful news!! So happy to hear things have gone smoothly and hope you're recovering well. Take care of yourself too, momma!

Seeking- well done on the hen do. Argh the first trimester for people with our history resembles hell on earth. I'm sure many of us on this thread have been known to wish we could just be knocked out and wake up in the next trimester! Hope your scan on the 16th brings you more reassurance.

Poppy- Sorry things are looking like a bfn :-( Symptoms play such mind games with us. When I was just pregnant with DS I had no symptoms and was convinced it was a BFN. Whereas there'd been a month I had every symptom in the book and then got a BFN. I remember feeling like I'd fallen in to a black hole I was so upset...!

Justla- congrats on your scan! This is such a big milestone with the odds thoroughly in your favor now! Enjoy pregnant lady- that bump is growing!

As for me, I had a major wobble yesterday. I've been quite calm so far. But yesterday I was really stressed and sleep deprived and become convinced it was over (because I'm not able to treat my body well). I realized then just how invested I've become as every day passes. Quite often at this stage I'd have had bleeding, or a rubbish hcg result to signal it's over. But I have no idea what's going on in there and I hate that it could be an absolute flop like one of my other pregnancy scans before DS. To see NOTHING in there when you've waited weeks to see something is kind of humiliating... argh! Anyways! I actually am feeling a bit better now, but certainly more anxious than last week. Scan is in 5 days....

Drttc · 07/08/2017 17:28

Thanks Harriet! How are you feeling?

JustLa · 07/08/2017 17:53

Thanks so much for all the kind thoughts everyone :) I'm actually comfortably smiling again thanks to you all, this is a recent record!!

Harriet I can't believe it! I'm positive I watched an 80's movie with a heavily preg lady decorating a nursery in blue denim dungarees with hair up all scruffy and I want that so bad! I was looking on boohoo and they have some lovely ones 😊 How cute it is that we had such a similar vision?!

Luna, thanks so much. We were too scared to look at the scan again lol... hubby wants to connect at 12 weeks so I'll wait for him :)
I did take a look at 9 weeks and baby looked like a baby, wiggled for me too.

Poppy thanks, I think there's just something about women, they just seem to understand more.
I've been thinking about how I will tell.
My mum and dad know as I need there support, my sis and two old friends know too.
I want to do some clever FB reveal just for fun, but if I do I'll wait until 13-14 weeks and I'm thinking about adding that I'm high risk in there, in case anyone hiding their issues wants someone to talk to? Idk yet... not a fan of putting emo stuff on yucky social media lol.
I'm telling other halfs family at 12.5 weeks when I come back from vaca in the West Country I think. Mother in law got a bit stressed out trying to hide it last time sold to want her to feel pressure this time.

Drttc, thanks so much! I like the rise in odds 😊 . You are so right about the first trimester, good lawd it's rough! I'm so sorry you had a crappy time yesterday, I'm so familiar with those feelings now, a really bad day like you've just had must have been hell.
5 days, that's not long!! Is that this Saturday? If you feel like wobbling out on a group of wobblers, we are here xx

On the daydreaming about a bump subject, I can't help thinking about Halloween outfits! Lol... I'm Halloween obsessed and keep randomly seeing wrecking balls etc... trying not to look too far forward but eeeeek

Xxx

LunaB · 07/08/2017 17:57

Harriet it's a classic look! Tried it myself when preg with DS but my giant tree trunk legs heaving under the weight ruined a bit of the 80s cool...

LunaB · 07/08/2017 18:03

Just a few gems in there - wobblers 😂😂 and wrecking ball 😝😝😝

drttc hang in there babe, we're counting the days with you 🤞💝

PoppyJ1 · 07/08/2017 18:31

I totally have the dungarees image with huge bump in mind too! But sitting cross legged on the floor with a paint brush? The woman is me, though, and has been for many years!

Thanks, DrTTC. It is very disappointing every month, had a slight sob this morning in private, but encouraged to know that it's the progesterone causing my rogue symptoms. The few months I was convinced I was pregnant and then terrified when I started spotting that it was a chemical or super early miscarriage. So that's one less thing to worry about. Very encouraging that you haven't had any bad signs up until now but normally would. You could just as easily go in there on Saturday and see a healthy bean. I am sure your relative lack of anxiety up until yesterday has helped no end and has certainly shielded you from some of the stress to date. Possibly a self protective response kicking in?

JustLa I can imagine the wrecking ball costume now and I love it! What fun. Halloween is really not that far away now.

When I finally get to 12 weeks, I don't think I will do the FB reveal even though I've fantasised about how it would go. I will tell my mum and best friend early and DP will probably tell his parents after a few weeks. Then I imagine we will tell his kids and his ex (his kids' mum) at 12 weeks and then anyone else who needs to know. Would be lovely to have people stop speculating. DP was asked if I was pregnant on Saturday because I wasn't drinking. People are so nosy!

Luna, LOVE the idea of the frosty morning stealth reveal with dog and snuggly clothes! I will endeavour to do something along those lines, if there is anyone left to tell!

Stuckinstressville · 07/08/2017 20:26

Hello ladies - mind if I join?
Had three mc since we started trying for dc2. Hypothyroid too. Unexpectedly during a break from ttc got pg and though had a lot of bleeding i thought was af turns out I was 7weeks gone but had lost a twin. I have a subchorionic haematoma and have lost over 1/2 pint of blood in the past two weeks
Epu put me on knicker watch as lots of
Clots hanging about ready to pop.

Went to the recurrent miscarriage clinic for a hello appt 2 months ago, was scanned on cd 7 (( early July) was actually 4 weeks already and had bloods but showed nothing and no one clocked I was already pg.

Rmc follow up appt last week at 8 weeks coincidentally and they immediately put me on 20mg pred and progesterone pessaries. !
Phew.

So day 4 of the meds....no one explained side effects or risks... am I in for a journey? What should I expect

Hope the bean sticks -booking in tomorrow!

LunaB · 07/08/2017 21:13

Wowzers Stuck - WHAT a story! I'm terribly sorry for the loss of your dear twin, how sad for you Hun...

Welcome to our TTC, Pregnant Wobblers Club!

So, sorry I'm a little confused, how many weeks pregnant are you now? And, are you healthy after the loss of the baby, or still bleeding/suffering from the miscarriage?

LunaB · 07/08/2017 21:14

Sorry! Got it, 9 weeks 🙃

I'm yet to start the meds, so I'll let the other girls hit you up with tips and tricks - welcome 😚

Stuckinstressville · 07/08/2017 21:19

Luna I also suffer from poor grammar , fast fingers , and verbal diarrhoea..... :)
9 weeks this week and they shoved me on the meds in the hope I will not
Mc. Losing a twin is very common so I am not dwelling. Seen a heart beat for the one I have and keeping legs crossed.

Off work for two weeks as gp was great but dreading side effects when I go back next week!

One thing that worries me is that my
Sickness has disappeared....

JustLa · 07/08/2017 21:34

Stuckin, welcome to our chat ❤️

I'm so sorry you've been through so much, I have also heard it's common to lose a twin, but I don't know if that can help ease the stress and pain you've been through.

But congrats on your pregnancy and the little baby you're baking! Heamatoma are also very scary but thankfully there are many success stories with them. A best friend of mine had a huge one and thought she had MC'd but now has a perfect daughter of 5 years old :)

The birth of your first may have triggered something that's stopping your pregnancies. What have you been diagnosed with? NK cells?

Here's what I know about the side effects (currently 10 weeks pregnant here on 25g prednisolone, a shot of heparin as I have sticky blood clotting disorder and cyclogest progrsterone pessaries)
Cyclogest boost your progesterone and strengthen womb. With the hormone increase can come bloating and high emotions as well as probably increasing other preg symptoms.
However, your prednisolone will almost certainly reduce breast tenderness and nausea for a start.
Also can cause more bloating, weight gain, moon face and make you feel a bit boosted.

Basically, the meds do mess with you a bit and mask pregnancy symptoms and make you bloat like a whale!!! (They have done with me anyways)

I hope this helps and am excited for you!!

Welcome again xxx

JustLa · 07/08/2017 21:37

Forgot to mention, I've had 3 MC's- 1x chemical at around 5-6 weeks, 1 missed which I passed naturally at 11 weeks and 1 missed that I had an EPRC operation on at 9-10 weeks. Both missed had stopped developing at around 6-7 weeks so I'm way further than I've ever been!

And prednisolone is sometimes prescribed to women with severe morning sickness to reduce symptoms so def masks sickness x

Stuckinstressville · 07/08/2017 21:40

Aw thanks for welcoming me :)

I am on pred but no idea why!! he muttered about auto immune issues - I have hashimotos. But never was tested for other than The basic suite of nhs rmc blood results

Prednisone scares me as only been on
It for lung issues linked to asthma :)

Congrats on being 10 weeks!

PoppyJ1 · 07/08/2017 21:41

Stuckinstressville, sorry to hear your harrowing story. You have come to the right place.

The Pred has some rubbish side effects including weight gain, disrupted cycles (not your problem at the mo) and mood swings. There are in fact loads but these seem to be among the most common in the group. Keeping an eye on your salt intake can help with the with the weight gain, as can increasing potassium to counter the salt. I read this and tried it and believe it works. I've been on 5mg then 2.5mg, someone on a higher dose may be able to better advise you. Personally I think it's all worth it because it seems to dramatically reduce miscarriage risk.

I do hope your scan goes well.

Stuckinstressville · 07/08/2017 21:43

Just - sorry for your losses. FlowersI had 6 weeks natural unplanned last year ... then two mmc in Dec and march this year at 10-11 weeks, one stopped at 7-8 weeks and one was twins but 7 weeks- erpc for both - hence why we were taking a break as I get my body needed time and to lose
Weight as I hit 89kg. So went on a diet in June a strict 1200
Low carb one and hit 83 kg again allllll whilst pregnant, drank a lot in what
Would have been the tww as well! Aghh! Ds is 22 months.

Sheepy1980 · 07/08/2017 23:01

Hi I am Katie I am ttc#2 but have had 14m/c the most recent 26/7/17 and still suffering.
I have been referred to prof quenby and am on 20mg pred 400mg Hydroxychloroquine and 120mg Duloxetine I have Lupus and Fibromyalgia as well. I am waiting for my initial appointment but still playing hospital ping pong with what me and my gp think is incomplete m/c but no one will agree 😡 As blood tests are normal and obs but my temp is high as I bbt and I know my normal is the low end of 36

LunaB · 08/08/2017 06:47

Sheepy, Katie - oh hun, oh my goodness what horrors you've been through... I'm so terribly sorry 😔 Am I reading this correctly, 14m/c?? Is there a pattern to how and when you lose them?

Welcome and I hope you find this group comforting and helpful...

Did you have trouble conceiving your 1st child? I have a friend who has Lupus and our treatments (mine for aggressive NK Cells) are the same.

When is your appointment with Quenby? I hear she's one of the best the people to see...

How old is your little one? Are you also being awoken at the crack of flipping dawn?

Sending lots of love ❤️❤️

JustLa · 08/08/2017 08:20

Morning all 😊

Hi Kate and welcome to our lovely little group.
My heart goes out to you, how you've made it through all that and still have the spirit to keep trying is amazing ❤️

I have APS which is connected to Lupus, have you been tested for APS? (also known as sticky blood) The NHS test for it so I would think so. I think you should be on heparin injections when pregnant and definitely low dose aspirin throughout as I believe lupus also can create the little blood clots in the placenta that stop baby from developing, like APS.
I've heard of Prof Quenby, you can ask her about heparin. I think you'll be in great hands and she will hopefully put you on the right concoction if and when you feel ready to try again.

With the suspected incomplete MC, have you had an internal scan to assess the womb wall thickness? This should be able to tell you if you still have tissue to pass.

Stuckinstressville, I had a couple of drinks in that time too! But I think if that had effected anything it would have presented its self by now :) You've done so well to keep hold of this little one, it's obviously strong! And now your meds have started kicking in you're giving it every chance of success 😊 which is great. When was your last scan and when is your next?
Going back to pred, you asked about risks. The only risk I'm aware of is the risk of developing cleft palette which is very low. I remember Mr S saying he'd never seen one in all his years of treating 1000's of patients

xxx

JustLa · 08/08/2017 08:28

Also Sheepy, sorry if I'm giving you info you already have but there's this guy I've heard of. Your doctor can give you a referral. He specialises in Lupus, APS AND pregnancy! I think he's 'the man' for your Lupus issues.
If you have the energy, tell your doctor you must see him

www.lupus.org.uk/news-events/research/lupus-research-team/263-professor-munther-khamashta

Xx

Sheepy1980 · 08/08/2017 09:42

Thank you, my little one is waiting for her Alevel results so she doesn't disturb much other than when she is tidying up for me.
I have not had a follow up scan since the hospital confirmed miscarriage, and my gp is trying to get me another scan but when I go to the hospital they do bloods and because they are sort of normal they send me home but still in pain still feel like death warmed up.
My dr sent the referral to professor quenby last week so anytime soon. I am on a waiting list to see the other consultant but my rheumatologist trained under this gentleman so is awesome and very supportive. I do have Hughes as well so on Asprin too.
I keep trying because I want one more and I know the end goal will be worth it. It is a possible implantation/placenta as all end between 8-9 weeks

Seekingmiracles · 08/08/2017 09:53

Welcome on board Stuck, what a roller coaster!! But congratulations on your pregnancy, I can imagine it's been a pretty tough few weeks with all the ups and downs! Hope the next few weeks are smooth sailing for you.

Sheepy... how have you got to where you are without falling apart. Massive respect to you for keeping strong and continuing. I always said 5 would be my limit. You're a stronger woman than me.
I really hope you get some answer re your incomplete mc. And I hope you find this group a place where you can off load and get support.

Just congrats on your 10 week scan! MrS says 10 weeks is really the crucial one, not 12 weeks. So hopefully you're out the other side now! You seem to ha e such a lovely NHS support system behind you which always helps. I had that with my mcs before Tallulah, but have since moved and they're not so personable and caring.
I've got my booking appointment tomorrow so I hope the midwife is a good'un. I know a few of them from last pg so I hope they're still about!

I think being late pregnant during winter is sooo much better than during summer! It's hard work being huge in the hot weather!!

Drttc it's so hard not to get attached isn't it. I told myself I wouldn't let myself think too far ahead but you can't help it. Each day that passes you want it that little bit more. For you to have reached this stage already is a great sign though, so fingers crossed you'll see some good news in 5 days time.

LunaB · 08/08/2017 10:03

Interesting Seeking, that it's 10 weeks, which are so vital!

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