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

Has anyone had to re-do the NK cells test after intralipids? I've had two lots of intralipids and now waiting for the results of the test - the dr wants to be sure that I'm not one of the 10% of women intralipids don't work for.

Sometimes I'm positive about all this, sometimes I've just had enough. I'm really not looking forward to going back on the pred - the non-stop hunger was appalling. At the moment I'm still on the weight loss plan - not far to go until I'm in the normal range of BMI rather than overweight! I think my FET might be in September, which seems ages away but isn't actually that far now.

Oh @ginandtonicformeplease sending you a big squeeze - I know how you feel, some days you just think 'shall we just stop' ... but you don't and you won't X

Ladies who were on Letrozle, can anyone report of pains the month they stopped taking this? I took Pred & Letrozole in June & July and am having a little break now as holiday dates have enforced us to do so, which is no bad thing, but oh my wow, I'm having intense pains (stomach and around the ovaries I guess) which I can only attribute to 'coming off the drugs'?! The pains started leading up to my ovulation. Did anyone experience similar?

@EmsIMO Did you gradually taper off the pred? I was told it's really important to do that or the side effects can be pretty bad.

Hi @ginandtonicformeplease, the midwife in Dr.S clinic advised me to wean off the pred if u re taking it for more than 10 days. If not, u can just stop it.. And regarding the intralipids, did u have to take it during ur cycle or for investigations and then test the NK cells level?

Hi @Hopeful07, mine is slightly different as it's IVF. After my first MMC, my clinic tested for NK cells and found I had elevated levels. I then had two intralipids before transfer, and took pred. More intralipids after a positive test. I had another MMC, so before this transfer I've had two lots of intralipids, then another blood test to see if the intralipids worked or if I'm among the 10% of women they don't work for.

@ginandtonicformeplease thinking of you! When will you get the results of your NK test?

@DaniMERL @Naticle My appointment with Mr S on Thursday went okay, he’s added hydroxy to my treatment plan as expected (thank you both for giving me the heads up it was nice to already know what was coming and have read up on it ☺️) He explained that it is an anti-malaria drug and it just adds another layer of immune support. I asked what happens if this isn’t the answer and I miscarried again (the pessimist in me wanted to know if this was our last option 😣) and whilst Mr S wanted us to think positively he did say there are other drugs which is good to know I guess. Given this miscarriage was slightly earlier than my others he suggested it may have been abnormal chromosomes but we will never know for sure without testing the ‘product of conception’ 😏 So I’ve started taking the hydroxy (bitter little buggers they are 🥴) and we have to wait at least 6 weeks before we can try again. If my dates are correct we will just miss an ovulation at week 5 so it’ll likely end up being 9 weeks... typical! I can see why you said it drove you insane @DaniMERL it feels like forever away already 😢 although I am kinda looking forward to a break from the Pred. I’m currently still weaning off the Pred & have been having quite bad headaches. I don’t know if it’s dehydration and not drinking enough in this heat, just stress of everything going on or a side effect of coming off it 🤷🏻‍♀️ Oh and I’m also still getting positive pregnancy tests which is frustrating even though I’ve stopped bleeding from the miscarriage. I have to test again in the morning and if it’s still positive go back to the EPAC for more bloods to test my HCG levels. They were only 44 last Monday so hopefully they’ve dropped 🤞🏽 the only silver lining may be that if my levels aren’t at 0 yet, once they are I should hopefully have my normal period and that may change my dates and bring things forward slightly following 6 weeks of hydroxy! Oh how we now wish for the simplest and strangest of things 😂

How’s everyone else getting on? Xxxx

P.s I feel like I write essays on here 🙈 sorry!!

@Wishing5tar the headaches are definitely the pred. I was getting them every month when I stopped, sometimes so badly that I couldn't go to work. I called them The Beast. That's why I decided to give myself a rest from them in the end (also because I wasn't getting pregnant) although don't go against Mr S

Good luck to you. I completely know what you mean about the waiting. So frustrating.

Hope everyone else is doing well.

Perfect timing @KittyKatSmile. After an expected BFN on Wednesday I came off the pred and today I have had the mother of all migraines today and have been crying on the bathroom floor not sure whether to throw up or attempt to remove part of my head. Such fun! I was massively optimistic and jumping the gun the other week in claiming I had no Pred symptoms. First few days I felt fantastic and then after about five days it tipped over into feeling horribly manic, anxious and shaky. The energy surges were horrendous and I had real trouble sleeping. Then coming off after ten days I've felt impossibly low. And then enter The Beast today. I've taken my migraine meds and am feeing a bit better now but I'm wondering has anyone else struggled with the mental health knock-ons with Pred? And how do you deal with it? All tips gratefully received! It's been kind of brutal.

@EmsIMO I've got my new Ovusense to try that this month. Thanks os much for the tip and I'll let you know how I get on.

@Wishing5tar I'm glad you have a plan of action. Every time you have to wait it feels like an eternity, I know. Hang in there.

XX

@Belarita I really have no tips on dealing with the Beast other than maybe setting a timeframe you'll stay on the pred before going back and asking him to change your meds. I regret not having done that, especially as I suffered so long with the Beast essentially for nothing. Hope your migraine meds kick in soon xx

@KittyKatSmile I have an initial four cycles worth of meds to TTC on before I'm supposed to go back for a consultation with Mr S. My migraines are often triggered by major chemical and hormonal changes in my body (I often get one before my period at that point where your oestrogen and progesterone drop off a cliff). I wonder if the residual effects of the pred masked that and then the pred withdrawal supercharged it today. I'll be more prepared for that and all the other symptoms next time but you're right, I'll keep in mind to go see him sooner if its just not bearable. xx

Hi @Belarita I suffer with low mood and anxiety. There is a book called Mindfulness I took a tip from which I find helps when you can't sleep. You need to empty your mind, like literally try and think of nothing at all, and hold it for one minute. every time a thought creeps in you push it out, and restart the clock of the one minute. It sounds silly, but when you are worrying it is actually very difficult to do, I quite often find I fall asleep before I can keep one minute.
I am also doing online CBT they teach you to break your feelings down into 4 components, the emotion, thoughts, physical, behaviour. The idea is broken down it is easier to deal with. They also say you should focus on the present, like right this second, you are at home, you have warmth and shelter and food, and someone who loves you nearby. I can't say I've really bought into it yet but I have noticed my mood has improved the last couple of weeks, more of a constant dull sadness than the usual peaks and troughs of hope and despair.
Are you also taking cyclogest? That's progesterone so could be contributing to the crash. I wonder if you can space out stopping them a bit so it doesn't all come at once? Like stop the cyclogest on day 10 but take a half dose of pred for an extra day or 2. Maybe the nurses can suggest something without you having to go in.

@Wishing5tar I had quite bad headaches when I started the Hydroxy but not sure if they started before this? I even went to the opticians to check my eyes weren’t causing it. It seemed to wear off anyway.
I break is annoying but you need to let this pregnancy resolve (I hated it when people said this to me) and you are ahead of the game getting the Hydroxy so fast. I should have got an appointment with Mr S sooner but was so used to every doctor just saying the above to me.
And I actually really enjoyed the one cycle of not tracking what day it was, TTC and the taking all the meds. The month off did me good.

PS. I had a slightly early 20 week nhs scan on Friday and all seems good.

Friends have started commenting how much better I now look and I think what they mean is that I have returned to normal after the affects of the pred. I’m not sure I had a moonface as such but it just looked a bit odd and not like me. I guess I bloated up all over top. I still have the facial hair from ear-chin but at least it’s very blonde! So weird

@DaniMERL that is such good news and also so good to hear that you come out of the pred fog. I was quite upset about it week 8-9 ish. I'm on so many drugs (pred, progesterone, oestrogen, clexane) and they have really messed up my body. I looked around 4 months pregnant (I'm quite petite so it shows on me very easily) which was upsetting at a time when you're so anxious and you don't want people speculating. I'm coming off the oestrogen now and I've noticed a difference; 2 more weeks before I come off the others. Thank you for sharing your positive story (and about the hairy face! I look like chewbacca!!)

I remain very grateful every day but I would just like the chance to do this on my own terms :-)

@DaniMERL that is such good news and also so good to hear that you come out of the pred fog. I was quite upset about it week 8-9 ish. I'm on so many drugs (pred, progesterone, oestrogen, clexane) and they have really messed up my body. I looked around 4 months pregnant (I'm quite petite so it shows on me very easily) which was upsetting at a time when you're so anxious and you don't want people speculating. I'm coming off the oestrogen now and I've noticed a difference; 2 more weeks before I come off the others. Thank you for sharing your positive story (and about the hairy face! I look like chewbacca!!)

I remain very grateful every day but I would just like the chance to do this on my own terms :-)

Sorry; I'm not really winning at life this week am I?!

@DaniMERL fantastic news! As if you’re almost half way already 👏🏽 I never even thought that it could be the hydroxy giving me headaches and/or the Pred - they haven’t been as bad the last couple of days so I’m hoping I’m over the worst of it 🤞🏽 As much as I’m frustrated by having to take a break I do honestly think it’ll do me good! I think we’re going to book a holiday for next month & I’ve started trying to focus on what I’m eating again as doing personal training 3 times a week takes it toll when your running on 90% bread and cheese 🙈😂 oops!

@KittyKatSmile how far along are you now? ☺️ & I bet you do NOT look like chewbacca 🙈

@Belarita aww I’m sorry to hear you’ve had such a bad time coming off the Pred 😣 hopefully it was just a one off and you don’t have to go through the same again 🤞🏽 I’d be interested to know what you make of the ovusense? I was looking at getting one before and might now invest so I can track ovulation/ learn more about my cycle during the next 6-8 week wait.

@Chickjen that’s a really good tip about emptying your mind. I’ve definitely found sleep a struggle lately so I’ll be giving that a go tonight ☺️ Might be a silly question but do you set an actual timer? Or just count to 60?
I’ve also done CBT too and found it really helpful - I’m pleased your noticing improvements! Colouring in really helped on the days when I just couldn’t shake that ‘sadness hangover’

Xxx

@Wishing5tar I'm 9w5. Harmony test at the end of this week.

This isn't perfectly relevant but I've been using an app called Mindful IVF and it's really really good. I am generally hugely sceptical about these sort of things but I've found it a real support. It's free to download I think and there are loads of sort of modules, including one on anxiety and sleeplessness which may help... worth taking a look.

Good luck to you. And great idea about taking a holiday. Yasss.

@Wishing5tar sometimes I count when I have trouble trying to stop thinking, but mainly I just try to keep my mind empty for as long as it takes to fall asleep. It kind of feels if you are counting then you are still actually thinking about something - the counting! I'd be interested to know if it works for you, or if I am just weird! 🍀😂

@DaniMERL wonderful news ❤️ Do you feel movement yet? And if so, does it help reassure you?

Hi Ladies

@Belarita Pleased to hear you got Ovusense! The information it gives you is brilliant I think so good luck X

Hi @ginandtonicformeplease Thanks for the info X

Great news @DaniMERL X

A general brain dump - I was having the pains right at the start of my cycle so before even thinking about not taking/stopping Pred. I've messaged the clinic and they advise 1, not to just stop pred because we've tried naturally this month - unhelpfully they've not told me whether to just start taking it from tomorrow (I'm on CD 21 and ovulated last Weds/Thurs) Any thoughts? And they advise 2, that they're not sure what the pains are from and to chat to them next time we're in. I'm probably just rather unlucky and have just had some weird side effects!

Me again - I'm panicking slightly now and could do with some input from anyone please! We opted to just try naturally this month as holiday dates fall mid cycle, and we had decided that I wouldn't take Pred, but the clinics email just now (from Geri) has thrown me a little, she says they wouldn't recommend we try naturally without taking medication.

I'm currently on CD 21 and ovulated last week and haven't to date taken any Pred. Should I bother taking it for a few days, then test? But we're then on holiday next week so if by magic things had worked, I can't go into the clinic (we're only away for 8 days)? Or do we throw caution to the wind and not take Pred (given it's not worked naturally/at all for nearly 4 years now).... ARGH!

Any advice appreciated X

@EmsIMO it really depends how you'll feel based on the various potential outcomes? There's no harm in starting it now, especially if you're not going to be able to get the intralipids straight away if it has worked for you. And then stop if necessary to try and avoid the Beast type side effects.

Fingers crossed for you x

@EmsIMO If it were me I would start the pred now and book for intras if needed when you are back from your holiday. Try not to stress or beat your self up over this ❤️ Remember MrS's NHS patients don't get intras at all and there are plenty of Dr's/clinics who only prescribe pred from BFP. If you start now you are still ahead of the game. Our own sunshineblonde1 only started pred from BFP and didn't have intras till a week or so later and she must be around 7 months now. 😀

Thank you Ladies @Chickjen & @KittyKatSmile really helpful XX Yep I started Pred today and will take for a few days. The first email I had yesterday from nurse Geri wasn't that helpful, but a follow up from Nicola that I had after messaging on here put my mind at ease. She essentially said that the steroids give you an element of immunity i.e. I should be fine. I didn't know that re his NHS patients ... basically phew and relax! Thanks again XX

Hello ladies,

Apologies I have been MIA. Unfortunately I have just suffered my 3rd miscarriage. I am not sure how to process this. This mc is awfully similar to the first one I had a year ago (almost identical) and back then I was not taking anything. This time I was on pred ‘just in case’ 2 baby aspirin and progesterone. I really do not know what makes sense and what does not... I am determined to do genetic testing to the embryo this time in case we can find out more.

What I need now are some leads as to what to do next... I have started reading the tread backwards and I find interesting things. If anyone has any insights as to what is best to do next please do share. I will be eternally grateful.

The set next step I know I have is a meeting with the NHS recurrent miscarriage specialist in September. My DH is determined that the embryos are chromosomal abnormal (we do not know) because of potential abnormalities he is carrying ( his brother has a syndrome) so the best step is to go for IVF. We had karyotyping done and it was normal for both of us... I really do not know.

Do you think it is worth paying privately for Dr S? I have normal NK cells but positive ANA hence my consultant prescribed pred...

Lots of good luck to everyone!