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Immune/NK issues - aka Pred Thread no. 23!

996 replies

Chickjen · 11/09/2019 22:33

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

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williteverhappen · 22/12/2019 04:22

Great news @Mairmum18 and @zoe16!! All the best for your scan on Monday @ginandtonicformeplease, both fingers and toes crosesd for you 🍀xx Welcome @LockThatFridge 🙂x

My dating scan all was well on Tues measuring 12+4 which is slightly behind my dates but my consultant wasn't too concerned.

My weaning programme, however, is completely different to what I was expecting! I'll be weaning up to 24weeks if I get that far! I was very surprised by this and questioned why it was being done this way and was told "this is how I've done it for all my ladies on the programme so I'm very hesitant to change it" although he couldn't answer why it was so different to Dr S's weaning programme when I showed it to him. So I'll be on the dreaded pred for much longer than anticipated.

Hope you all have a lovely Christmas and 2020 is the year for us all xxx

marly22 · 23/12/2019 19:29

Hi everyone,

I am under Dr. Shehata on the NHS. I've had 6 miscarriages and one suspected. I just got a faint bfp but I'm so scared. I realized I ovulated 2 days earlier than usual so that means that I took the steroids at 2 dpo accidentally. I'm so depressed and really worried I've caused myself to lose another baby. Why can't finding out I'm pregnant be a fun lovely experience?

MairMum18 · 23/12/2019 19:47

@marly22 I took my pred 1dpo on the month I got my BFP, which I didn't get until 14dpo (my test at 10dpo was negative) so I had a 4 day break from the prednisolone. I panicked so much thinking that 4 day break would have messed everything up, my 7 week scan last week was all good. Don't panic until there's a reason too, just try and take it a day at a time. Xx

MairMum18 · 23/12/2019 19:49

Also @marly22 I forgot to say congratulations x

ginandtonicformeplease · 23/12/2019 21:42

Had my scan today, they said all looks good. I'm 8w5d, booked in for another scan in a couple of weeks as I'm still really worried. Also had intralipids today. I think that's it for the intralipids now but I forgot to check with the clinic.

And congratulations @marly22 Thanks

zoe16 · 23/12/2019 22:38

Wonderful @ginandtonicformeplease! I have another scan booked in two weeks and another two weeks after that. Thank God my doc understands. Def check with your clinic as I had my second intralipid last weekend and will do two more in a few weeks time.

Congrats @marly22 I started pred three or four days after I thought I’d ovulated and so far everything is ok.

ginandtonicformeplease · 23/12/2019 23:37

@zoe16 I had to have two intralipids before the FET, then one within four days of BFP, then this last one approx four weeks later. I don't know how that compares?

IVF clinics don't generally scan past 9 weeks, which is a shame as I really like the sonographer and fertility midwife at mine - we were all holding our breath this morning til she saw the heartbeat. They do recommend other places for further scans, but they're all central London and so very expensive compared to where we live!

KittyKatSmile · 24/12/2019 10:07

@ginandtonicformeplease one thing to consider is whether you're planning on having the Harmony test (although from memory you've already had a lot of genetic screening so does that mean it's been covered already?) They do two scans, one at the test time (around 10 weeks) and one at the results (2 weeks later) so that might help you out. Obviously not cheap but it was definitely money I was prepared to spend and getting the two scans was a nice sweetener! Glad everything is looking good x

marly22 · 26/12/2019 18:29

Thanks for all the congrats but my line has now been vert faint for 4 days so it's probably another miscarriage. Hoping it was just a chemical and not another miscarriage due to my high NK levels. Has anyone still miscarried on the pred but then eventually had a healthy baby??

KittyKatSmile · 26/12/2019 19:13

@marly22 I have miscarried on the pred and although I don't have a healthy baby in my arms, I do have a 30 week one in my tummy. Have you had your bloods done? That's the best way to see if you're progressing x

zoe16 · 27/12/2019 13:12

@KittyKatSmile are you still taking levothyroxine and if so what’s your dosage? How often do you check your levels? My TSH has jumped from 0.78 to 2.06 in 4 weeks and I’m worried I’ll need to increase my dose from 25mcg to 50mcg to keep it below 2.5. Waiting on my doctor to confirm but his office is closed due to the holidays.

KittyKatSmile · 27/12/2019 14:03

@zoe16 I am still taking it, yes, although I've been fairly lax as I seem to find it quite hard to get prescriptions for it. I'm on 50mcg mon-fri and 75mcg sat and sun (bizarre). I have stopped twice in the last four months, probably for around 3 weeks each time. My TSH is 2.01. Don't know what it was before but maybe around 9 I think?

zoe16 · 28/12/2019 13:35

Thanks @KittyKatSmile, I’ve upped mine to 50mcg for now and will continue checking every few weeks.

marly22 · 28/12/2019 16:40

Definitely another miscarriage. This is two chemicals on the pred. I don't even know how to feel. Every other test came back normal.

williteverhappen · 29/12/2019 04:02

Hi @marly22, so sorry you've had another miscarriage. I hope you are doing OK xx I had a similar experience where I had 2 chemicals whilst on the pred (6 miscarriages in total and thought I'd be the one that it wasn't going to work for). I carried on trying and finally got my bfp which is now 14weeks 🤞I know its difficult whilst you are going through it all but try not to give up hope. Wishing you all the best xxx

MrsMargot · 02/01/2020 07:56

Hello everyone! Happy new year.

I took a 10-day break from the internet and I am slowly coming back!

@marly22 I am so sorry for this. It really sucks...
@williteverhappen @ginandtonicformeplease very happy everything is going well! I had my scan the 31st and everything is going well this end too. 🙏🏻❤️

MairMum18 · 02/01/2020 10:20

@MrsMargot that's great news about your scan, I had mine too on the 31st and all is going well, my dates are perfect which I've never had in any pregnancy, so it's very refreshing to have. When's your due date? Mine is currently 5th August (though I know it may change). I've now got a 3 and a half week wait until my 12 week scan. I don't know how I'm going to cope!

zoe16 · 03/01/2020 16:30

Happy New Year lovelies, hope 2020 will be kinder to all of us.

Great news @MrsMargot and @MairMum18! My 10wk scan went well this morning, even got to see the little one jumping about, it was truly amazing. Next scan in two weeks then start weaning off meds, can’t wait!

MairMum18 · 03/01/2020 17:50

@zoe16 that's very exciting. Don't know what I'm more excited for my 12 week scan or being able to come off the meds. I've got awful acid reflux and the ranitidine doesn't seem to be helping much, am now glugging gaviscon by the bottle (and it ain't cheap!) and don't get me started on the moonface.

Hope there's more luck to come for you all this year. Can't wait to hear more success stories! Xx

MrsMargot · 03/01/2020 19:46

@MairMum18 I cannot believe your scan was the 31st! Mine was too! If you remember anyone looking like a nervous wreck then be sure that was me 🤓. I try and be level headed. To the point that I have NOT checked when my due date is yet. I also told Dr S NOT to tel me until I am through the first trimester. I know I am around the same time as you so a summer baby (should everything goes well 🙏🏻).

@zoe16 such good good news!!! It is amazing when you see the baby. I also saw the little one jumping around (or waving as the doc said!). Needless to say that I started crying and I could not stop. Happy tears but as I said, I try to be level headed. ❤️❤️❤️

KittyKatSmile · 03/01/2020 19:57

@MairMum18 try omeprazole, available from Boots without a prescription and saved me when gaviscon did nothing.

LockThatFridge · 03/01/2020 21:04

Happy new year everyone. I got my antibody test results back today. Negative for thyroid peroxidase antibody but positive for TSH receptor antibody. I have been advised not to try to ttc until I have been treated which may be 18 months to two years. Does this sound right to you or is my consultant being overly cautious? I’m obviously absolutely devastated by this and I’m no spring chicken so I might not have two years. Should I get a second opinion?

ginandtonicformeplease · 05/01/2020 16:26

@zoe16 I just had a scan this afternoon (10w4d) but the baby was having a snooze after the roast dinner I'd just eaten! Eventually after I coughed it stretched a bit but then straight back to sleep - just like DH Grin.

Is anyone else on clexane? I counted my meds up and found that I've got enough clexane until 11w5d rather than 12 weeks exactly: just wondering if anyone else is on it, and whether I should see if I need to get two more doses?

zoe16 · 05/01/2020 17:37

@ginandtonicformeplease great news and taking after dad already! My dh is a squash player and he swears baby was practicing squash moves as the arms and legs were wiggling about. We took a video of the ultrasound and we keep watching it over and over 🙂
I’m on clexane. I have enough to last me until 13wks, but my doc had said I can stop from 11wks. I can’t see what difference the two extra dose would make but get it if you think you will be worried. Can’t wait to stop the clexane!
Are you on cyclogest and when will you stop? I wanted to start weaning off at 12 wks but just counted and realize I’ll have to start weaning at 11wks. Should be alright?

ginandtonicformeplease · 05/01/2020 18:16

@zoe16 I'm also on an IVF thread - different clinics seem to say to stop cyclogest at different times, some as early as 8 weeks. I'm supposed to be taking it until 12 weeks, along with oestrogen and the pred of course. If you want to keep on taking it for reassurance it can't do any harm - and it is one of the cheaper drugs to buy!

Love that your little one was playing squash already Grin