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

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

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 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

@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.

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

@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

@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

@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

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

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.

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

@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 🤞🏽🤞🏽🤞🏽

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??

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

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

@Wishing5tar mine is on Thursday. Last week now... I am on so many drugs and am so huge and bloated. I'm also still injecting blood thinners which are painful and have left me looking like I've had a fight with a jungle full of mosquitoes....

@KittyKatSmile thank you 😘 it really feels soo long already. I still don’t quite believe it and have been testing everyday 🙈 (does anyone else do this?!) What date is your scan? Mine is the 1st August.

@Anatrina thanks lovely! No I didn’t see Mr S yesterday just the midwives who were lovely 😊 I’ll see Mr S at my next appointment when he does the scan 🤞🏽 I’m soo pleased your not having any side effects from the meds.

@Hopeful07 thanks hun xxxx

@Wishing5tar - congratulations, that s wonderful news!! Great they had a quick turnaround for the intralipids..Fingers crossed for ur 6/7 week scan..
@KittyKatSmile - i know what u mean..i always feel i have another 2ww continuing after bfp..its never easy to relax in this journey..Good luck for ur scan xx

@wishing5tar that is amazing news! Congratulations! I’m so pleased for you. Did you see Mr S when you went for the intralipids? Good that you got them in so quick.

@kittykatsmile Got everything crossed for you - must feel like such a long 3 weeks. Sending positive vibes.

I’ve been on the pred and progesterone for a few days now and don’t seem to have any major side effects.

Thinking of you all xx

@Wishing5tar amazing news! Congratulations! The time between BFP and scan is just so long; I don't think anyone who hasn't had a loss can understand it really. I am 2 weeks past BFP and one week to scan.

Congratulations again xx

Hey ladies

I’ve just been catching up on all the messages from the last couple of weeks. To say things have been crazy lately would be an understatement 🙈 We’ve been getting work done in the house (which hasn’t gone to plan 🙄) and then brought home our amazing puppy, Chip, who is 9 weeks old tomorrow. I honestly didn’t know I had a puppy shaped hole in my heart but he’s definitely filled it 😍

Oh and then yesterday I got my BFP 😮 Drove down to Epsom after work and have had Intralipids this morning and now on the loooong 6 hour drive home. It all feels like a dream and we’re trying to just stay realistic about things - just need to make it to the 6/7 week scan now and then focus on the next step.

Thinking of you all, loves xx

Hey @DaniMERL I hear you. I'm just over a week away from my first scan, which was when I discovered I'd lost the last baby. Thursday is the day the last one died. I'm just feeling so anxious. And I've just got my thyroid tests results back, which had gone back to normal after I'd been taking the drugs and I was only retested because of an administrative error but it's just come back abnormal so I'm obviously terrified that will cause me to miscarry. Eurgh.

Hello @summertimehere. Just wanted to wish you good luck with Dr. S and to tell you to go for it even if his manner is difficult. I'd had 4 miscarriages before seeing him (and a further 1 whilst under his treatment).
I'd had lots of tests for miscarriage approx. 9 months before seeing him and he refused to accept them when I said they weren't needed 'this isn't pick n mix you know'!!! 'I've got a reputation to maintain' Pretty shocking. I nearly didn't proceed due to his manner but Im so so glad I did (I now have a 10 month old daughter).
I did feel like a cash cow during the treatment and after the miscarriage but now feel incredibly guilty.
I was 41 when I first saw him. Had a miscarriage under his treatment at 42 and then daughter age 43.
Go for it. I nearly didn't and can't bare to think of how close I was. If you have any questions, please email directly xx

@ginandtonicformeplease argh! What a headache. I have to admit I don’t fully understand all you are talking about but it sounds way too complicated. I just wanted to send me best wishes to you anyway. Are you on any other threads or support groups specifically for this kind of dilemma?

I’m still plodding along. 16 weeks now and having my own mini dramas every other day. Spending a fortune on private scans just to reassure myself the baby is still alive. I feel on the verge of craziness but am obviously still v grateful to be where I am.
Have now weaned off the steroids and Hydroxy so that feels good. Last scan and intralipids with Mr S on Monday although I will probably pay for extra scans with the professor too.

Love to you all xx

Hi ginandtonic I don’t check this thread v often but sorry ur having to re conisder so many things. Just to mention I had my 4 frozen blasts from age 28 defrosted and tested. They all survived the process but all were chromosonally abnormal. For me I was so glad I did that as otherwise would have to go through 4 potential mc with all the exp and exhausting immune treatment. Instead they all got thrown in the bin and I did another fresh cycle, age 32 and weirdly got 3 normal blasts. My first pgs normal transfer gave me my son after 6 mc and lots of immune tx. Saying that I know of many pgs transfers which fail and I’m about to do my second and I’m pretty sure it won’t work but watch this space.

For me I just couldn’t hack another mc my body was broken and I was emotionally done with it all. Pgs just made sure for me the seed was good (I know there are cons with it but for me the pros weighed up at that time) and then I used immunes for the soil! I did also use ivig just to add ...but this time Im not (prob a mistake!) but I’m taking R chance without this time.

It’s a really hard descion. For me I think pgs was the answer but I’ll never know. Loads of doctors including shehata discouraged me and so I kept going and going without it until I finally got one mc tested (trisomy 13) and then myblasts rested. And then I knew that’s wot I had to do

Ps I’ve also been to argc if you need to ask.