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

Hopeful have you had your transfer? Hope all went well x

@Cream123 - yes transfer went well, waiting impatiently for the results now!! How did ur transfer go? when ll u be testing?

I transferred on Thursday. It didn’t go too smoothly sadly they never had a problem before but they struggled to get the embryos in the right place and there was a lot of pushing and prodding. Don’t think this one will have worked :/
Hope your feeling more positive.
Not sure when to test, I almost don’t want to u know!
U??

@KittyKatSmile 😞 bless you! What are you taking the blood thinner injections for? Sorry I’ve you’ve already said, there’s soo many messages now 🙈
I’ve got everything crossed for Thursday for you 🤞🏽

@Hopeful07 @Cream123 - thinking of you both and crossing everything that you get a positive result when you test 🤞🏽🤞🏽🤞🏽

@Wishing5tar did you test 12dpo as planned?
Good luck @Hopeful07 and @Cream123

How’s everyone doing? Congrats @Wishing5tar btw - great news. I know how slow the days and weeks go and it’s pure agony. I’m not sure anything eases the impatience and anxiety to be honest. And yes I was testing all the time, particular as I had just had the chemical p where the lines did sadly fade to nothing.

I am back at the clinic tomorrow for the 16 wk scan (should be 17wks tomorrow) and hopefully, fingers crossed, the final intralipids. Is strange to think it could be the last visit and also the last enormous amount of money spent on that card machine at that ridiculously tall desk.

I’ve almost lost count but I think I’ve now had 13 scans in total (CRP clinic, private and EPU and standard NHS combined) which seems complete madness - sometimes 2 in a week. Even between scans the anxiety creeps back in and my overactive imagination has me believing all sorts.

Haha the ridiculously tall desk 😂 @DaniMERL
All the best for tomorrow and fingers crossed it’s the last visit. You’re doing so well. Such a tough journey but hopefully it will be plain sailing from now on xx

@Anatrina I actually tested on 13dpo because I didn’t have any of the FRER tests in that Mr S recommends we use. So I ordered some online to come the next day and tested on Tuesday morning. There wasn’t a line and I was convinced my period was coming (so I stopped my steroids) but later that day there looked like a shadow line on the test. I thought I was just imaging things at first but my husband agreed there was ‘
something there. I tested again on the Wednesday and got a very faint positive and it’s got darker everyday since 🤞🏽 So I’m kinda glad I tested late or I would have stopped my steroids for longer (I only had a one day break)

Stressing this morning though as I’ve had some light pink discharge when I went to the loo 😞 I also had some dark brown discharge yesterday and lower back pain last night too. I’m just hoping and praying it’s everything settling in and not the start of another MC 💔 lots of tears while cuddling puppy this morning 🙈

@DaniMERL good luck for your scan today hun 😘 do you know the sex of the baby already?

Did any of our pregnant mama’s have any early pregnancy symptoms? Cramps/spotting/back pain? Urghh I hate that we have zero control over what happens 😩 xxx

@Wishing5tar congratulations, great news. I had quite a lot of cramping early on, much like AF coming on. It's such a fraught time. I hate that our history means you can never really enjoy what you're going through xx

@KittyKatSmile I know it totally overshadows any happiness we may feel 😞

The midwives at Mr S’s clinic have advised that I stop my aspirin and double my Cyclogest and if it continues to go to my local EPAC (although I’m sure at my local one they only see you after 6 weeks). Thankfully it has only been once this morning and I haven’t had any since, although I know that can change in an instant xx

Hi Ladies

I'm just joining in on this chat - I've been under the care of Mr S since February and have done 2x Pred cycles, and 2x Pred & Letrozole, no joy yet. I have a 5 year old and we've been ttc for number two, for four years now.

I just had two questions if anyone could give me their thoughts please. What do you Ladies think about testing so early? Twice on just the Pred cycle I continued my meds for an extra day to test again to be sure, but both times got the same result. I just wondered if anyone on here has had a BFN but tested again and got a different outcome? @Wishing5tar It sounds like you did something similar, or just tested a day later than planned?

Also, I take Pred from the day I ovulate and missed/forgot a day this cycle, any thoughts on whether or not that really matters? I sent myself into a real panic over it but reading on here I get the impression that some women only take Pred from the day of a BFP?

XX

@Wishing5tar Glad it’s only been once and doesn’t seem to be continuing. Fingers crossed it’s just settling in as you say. Also great to have the advice of the midwives for these things.

@EmsIMO I am on my first cycle of pred and really don’t like having to test early. I tested yesterday morning which was 10dpo and it was negative. I took pred again this morning and will test again tomorrow.

I’ve previously had a negative on 12dpo and then a positive 14dpo albeit not with a Frer and also unfortunately it turned out to be a chemical.

I don’t think missing a day of pred would really make a difference. As you say, some other consultants only prescribe pred from BFP.

@EmsIMO welcome, although sorry you find yourself here too 😞
I was honest with Mr S at my last appointment (after 2 months of Pred) and said I thought I would never get a positive result only 11 dpo. He agreed for me to take pred for 11 days rather than 10 and test on day 12. It just so happened that I took it for 12 days this cycle and tested on day 13. I got a very very very faint line on day 13 so if I’d have tested on day 11 as per his original plan then it definitely would have been a BFN.

However he did say that if I got a negative on day 12 but my period still didn’t come, to test again a few days later and start the Pred again if it was positive. He also said that it wouldn’t be an issue if I had missed a few days of Pred (as my husband asked specifically) so I definitely wouldn’t worry about missing a day or two. Mr S explained that the process used to be to take the Pred from ovulation until your period came but they found that it was exposing people unnecessarily for an extra few days so they changed it to 10 days.

@Anatrina yeah it’s nice to be able to contact the midwives ☺️ they replied at 9am this morning with a plan so that put me at ease a little.

If only there was a crystal ball into the future! I’m fine if someone said it’d take X amount of time, as long as you knew that pregnancy/baby would be healthy xxx

Thanks so much @Anatrina xx

@Wishing5tar - Really helpful and also interesting what Mr S said about missing a dose/taking for an extra day, thank you (and good luck!) xx

I actually had to test this morning (and got a negative) but I'm only 11DPO. I've been torn over the fact I think it's just too early to tell, despite today being the day I was told to test. I've decided to take my medication again (I've taken it just now - I don't sleep on Pred anyway so doesn't seem to matter what time of the day I take it!) and I'll test again tomorrow, possibly even Weds. Thanks Ladies x

@EmsIMO thank you & good luck to you too 🤞🏽 Let us know how you get on xxxx

@EmsIMO I think we are the same dpo. I may wait until Wednesday too ... I would rather just wait and see what happens than test! Just difficult with the drugs. Good luck 😊

@Anatrina Ha! Good luck - I tested again today and another negative so haven't taken my medication today x

I wondered if anyone knew whether taking the medication holds off your period from coming (perhaps the Cyclogest?). Last cycle I tested, got a negative, stopped medication and my period came the very next day. I'm just wondering if by taking medication for another day or so that I'm delaying the obvious... Or has anyone has their period whilst on the meds? Any info greatly received! x

Also what P-tests do you Ladies favour? I've been using digital ones but it sounds like a lot of you use the good old basic ones?

XX

Same here @EmsIMO So disappointing!!

I don’t know the answer to your questions as it’s my first cycle on meds but interested to hear what everyone else thinks.

I usually use the pregnancy tests that come with the clear blue fertility monitor. I don’t think they’re very sensitive for testing early though as that was the one that I had a negative at 12dpo and positive at 14dpo. Using the Frer’s though now x

@EmsIMO I believe Cyclogest holds off your period, yes.

I hate the digital tests with their aggressive 'not pregnant' windows! I favour the FRER especially given how early we are supposed to test. And then the opportunity for some line eyes of course!! Pink dye ones are supposed to be the most sensitive I believe.

@Anatrina @EmsIMO aww sorry to hear that you didn’t get your BFP this month ladies 💔 it’s such a cruel waiting game.

With me, I’ve finished the steroids and got AF 3 days later. I actually found that my cycle became like clockwork since I started the treatment plan & meds (it was usually always a 28-30 day cycle but dropped to 27) so I don’t think the meds are holding AF for me.

I use the FRER tests but have used the clear blue digital with the weeks indicator too. Although seeing the weeks on the screen and feeling like it should be higher does stress me out so I maybe shouldn’t anymore 🙈 I definitely agree with @KittyKatSmile that the pink dye tests appear to be more sensitive.

Thank you @KittyKatSmile and agreed, I find the digital ones so harsh! I didn't know that re the pink dye ones so have just bought some on Amazon (obviously after panicking and buying various different brands from the Chemist this morning for an extortionate price!) X

@Anatrina - So interesting to read about your negative/positive, thanks for sharing that and sorry you had a the same result as me today! Next time XX

@Wishing5tar Thank you and thanks for your input re the tests and meds Xx

I get the impression, that a few of you, despite being on Mr S's plans, go with your gut feeling sometimes and continue the med's for a day or so longer, test again etc which is really good to know and is what we did the first two cycles - Glad to know I'm not alone in this! X

Hi all ,

Just reading the above conversation and happy to confirm what I know which is the same as others have pointed out.

It’s okay to stay on the pred a day or 2 longer than 10 days but also no harm in coming off after a negative and then still testing and restarting after a positive because it stays in your system.

I would strongly advise taking it from ovulation and not from BFP as this is the clear advice from Mr S and this is the bit that he believes makes the difference. I figure if we are paying a fortune for his advice it’s worth listening to.

I didn’t find the meds messed with my cycle but I did find it took us longer than usual to conceive (5 months for first one which failed before we added Hydroxy to the protocol).

As for the tests - FRERs are absolutely the most sensitive and IMO reliable and you can buy them cheaper online in packs of 2. I’m a serial tester of all varieties, makes and models and I wouldn’t try anything else when testing before period is even due. It also gives the most consistent results when comparing line progression which actually proved to be important for me as on one cycle I had developing positives from 9dpo but they then disappeared at 13dpo. I rushed to have my intralipids (as advised) but If i’d just held off a few days I’d have saved £350 as it was a chemical preg! Admittedly they don’t advise wasting but I found it really depressing to pay out twice for intralipids for 2 failed pregnancies.
For this successful pregnancy I held off a bit and it obviously hasn’t affected it negatively.

Had my 16 week check and intralipids yesterday and all okay. Got discharged from Mr s which is great.

And it’s a boy - we found out from the harmony testing done at 10 weeks.

Good luck all. Am still v much on this journey and love to hear the updates x

^^ that was supposed to say waiting, not wasting