Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

Hi @crystal2020 they've booked me in for Friday which will be day 9 as they agreed better early than too late again but if it is far too early, won't they just give me the trigger to take home or will I have to go back in? I'm booked in with Dr Jan too - so I'd be interested to hear what you think!

@NICK7nick7 headaches are definitely one of the early side affects of hydroxy, but they do start to subside after a couple of weeks and when your body adapts to the medication! Hope that helps

Thanks @VenusStarr now I'm booked in earlier let's just hope it doesn't go the opposite way! X

@NICK7nick7 I only had gastrointestinal disturbance, and didn't notice anything else and that went away after a few days. I didn't get headaches but there are a few listed side effects but definitely more preferably to the pred.

Thanks so much for your responses. I’m only on day 4 so hopefully they subside. On a positive I’m sleeping really well on them which is new for me!

@crystal2020 I've just seen Your question sorry - no it wasn't really spotting it was a proper bleed but just lighter and as it was before 6pm I had wondered if I should count it as day 1. My letrozole instructions did say start from day 2 or 3 so if I started tomorrow I guess I'm covering all angles even is today is day 1 or 2... if that makes any sense!!

Hi @hrtbrk2 I will let you know how I get on! Not keen on the idea of someone new poking around down there haha. But grateful to get seen on day 9. I had to go back a 2nd time when I went too early on day 8 (that was a combo of Dr S being worried about my lining and not being sure how many follies I would end up with). But if you’re nearly there I’m sure they would just send you off with the trigger. Going back twice was an expensive month so ideally you won’t need to! If it was a normal period but just lighter I’d be inclined to count that as day 1. X

@hrtbrk2 I'd say day 1 today too :) goodluck for this cycle. Are you on the same dose? Xx
@Crystal2020 Dr Jan is nice, he's a bit more approachable then Dr S too so ask as many questions as you want! 😬

It's been 13days since I had the MVA for my miscarriage but had a positive test still today I was hoping it would negative as I usually get a negative after about 10 days. It was that early detection clearblue that gave me a negative when I was pregnant and now has given me a positive when I need it to be negative. I'm never buying them again lol!
Should I test again in a few days or call the epau?

Thank you @HoldingOn2Hope yep same dose, so hoping for more than one fat folly this time.

Have you stopped bleeding or do you still have any spotting etc? I'd test in a few days and then ring EPAU on Monday if still positive - I was always been told up to 3 wks and definitely after you've finished bleeding - although I'm not sure with an MVA if the same applies as I've not had that x it's horrible isn't it when all this time we wish for positives and then after the MC's we desperately need a negative - the rollercoaster of cruel emotions we go through - so unfair. I hope you're doing ok though lovely - when do you get your test results now? X

Thanks so much @HoldingOn2Hope, will def use my chance to ask Qs then. I need to ask about the timed intercourse again as my husband just doesn’t believe that doing it once a day for 2 days is enough...

That’s so annoying the test is still positive...wouldn’t blame you for boycotting those Clearblues! Hope you get your test results soon and that AF shows up ASAP xxx

@Crystal2020 I also think the timing of 24 hrs after the trigger is quite late, because what if you ovulate before then? I know the trigger is set to go after 36 hours but when I went for my last scan my body was already ready to ovulate so when he said intercourse 24hrs and 48hrs after I thought - should we not still get a quick shifty in the same night as well just in case !

I'm actually quite glad it will be Dr Jan because he is also a general gynae specialist and I have some questions about some of the 'cyst' related information that keeps appearing on my records so good to know that he is approachable @HoldingOn2Hope!

Haha yes I think exactly the same about the 24 hour thing @hrtbrk2! My husband and I have a tiff about it every month because I say there’s no point paying for the doc if we’re not going to listen while my hubs thinks we should be doing it as much as we possibly can! X

It took me 7.5 weeks to get a negative test after my failed medical management and then D&C in Feb if that helps @holdingon2hope? So annoying. I hate seeing those positive tests. It's like another bloomin kick in the teeth after something awful. I was told to keep an eye on it three weeks after. And then my consultant monitored my beta HCG in a blood test which was 34 3 weeks after (needs to be below 5) as it was stressing me out testing all the time and compounded my distress. Because of COVID, I just used pregnancy tests to monitor it down in the end but I also got a period when I had a positive test. Very weird.

Thank you ladies, I'll test again in a few days need to go and buy some tests as don't want to waste my frer ones!
I did call the epau and they said give it 3 weeks, i've always been told 2 weeks before.
I didn't have much bleeding at all only just day of the MVA and spotting the day after which continued for a few days only when I wiped.
I've had horrible headaches this week though so I guess that's because of the drop in hormones?

I finally got around to reading 'it starts with an egg' so have ordered a whole load of supplements 😑 it was just impulse buying and I felt like I was doing something about this crap situation!

@hrtbrk2 I won't get results for another few weeks yet. Yes Dr Jan is a gynae specialist, I researched about him when I thought I was going to have to have the so called ectopic removed. Also I found Mr S was asking his opinion very much in one of my appts so it made me feel he must be good at what he does!

Hey,
I am losing it
Since the day of my positive test on tuesday, i still havent started my treatment (aspririn+heparin+progesterone; I have an APS).
I called uclh, and they seem to have not seen my email (I had to email them on the day of the test +). I dont know what is going on, why are they treating me like that? I just went to the pharmacy to at least start the 75mg aspirin.
I have never been more sad and stressed.
I feel so lonely right now. They put me in so much distress :(

I'm sorry to hear your experience @Sophfr17 have they sorted your medication now? You're doing everything you can ❤️

Hi,
I finally called them, again, and it seems that my email got lost in translation :(
I have my medications. I feel so stupid but i am freaking out. I dont know where to inject, belly, thigh? I am very thin, and the nurse says that i have no fat on my belly, so i should try the thigh. Or my boyfriend will do it... i dont know what's the best.
Has anyone done it?
Take care xx
S.

@Sophfr17 I have injected Fragmin which I think is similar, I was told to use my thigh. You have to pinch so you have a lump of skin to inject into. Keep the needle at 90 degrees, so it goes straight in, not at an angle. I found it stings, so maybe it will be easier for your boyfriend to do it the first few times. You could try putting ice first so the skin is a bit numb, and experiment how fast or slow to inject which works for you best. I had huge bruises afterwards I hope it won't be the same for you. Good luck! 🍀

About the timed intercourse, I think the sperm needs at least 24hours to replenish properly, so less is more so to speak. 🙃

I injected clexane @sophfr17. Personally, I would learn to do it yourself so it give you confidence and freedom. @chickjen gives good advice. I would alternate from tummy, left thigh, right thigh. I was told to go round my belly button in a clock face. I also have very little fat on my tummy. It stings a lot. I used ice packs - freezellas - for 5 minutes before and after injections. I found it easier to do the plunger really slowly. The injections have to be done at the same time every day as well. I had to set an alarm as I'd forget. Good luck! You'll be great. X

Hi,
So it took me 3 hours yesterday evening to allow my boyfriend to do it. I feel so ridiculous. And yes, by using an ice pack 5 min before, I felt nothing. That was a great advice! I chose the right side of my waist. Couldn't do the belly, to traumatic for me... when we found out my 1st baby was sick at 14w, they wanted to do the amnio, but I couldn't let them do it (images on the screen were enough, and they collected tissue during the surgery).
You truly are amazing girls, responding so quickly, and giving so much support!!! We are all going through a lot, we are fucking warriors and we deserve the best.
Take care, and thanks again
Bisous
S.

@Sophfr17 well done for getting through the injections. I'm petrified of them and thought of having to have them when I ttc again makes me feel sick. I can cope with the trigger shot and g-f as it's like a pen injection.

Ladies, I'm waking up with awful headaches is this maybe because I've warned of steroids (6 days ago) or because hormones levels are dropping? I never get headaches like this I'm having to take painkillers which is unusual for me.

Hi everyone. Fell off this thread so just checking in. Hope everyone is surviving.

@Crystal2020 I think I’ve prob said this before but I’ve basically stuck to the timing advice on SO and conceived twice - first cycle first time, and 3rd cycle second time. On my first time we had sex roughly 24 and 36 hrs after trigger (trigger Monday night, sex tues night and weds afternoon). Second cycle we did it three nights in a row starting from the trigger night.

The sperm takes around 24hrs to replenish as far as I understand, or longer if there are any issues, so I thought it was counterproductive (literally 😂) to do it any more. We’d also try to have sex a couple of days before the trigger so it was “fresh”. Good luck!

Thanks @HarrietM87, I have quoted you to my hubs! I asked Dr.Jan yest and he said it’s once a day as a minimum as opposed to just once a day -and I said that wasn’t my understanding of it. Anyway, think it’s probably safest to stick with the once a day theory. Thank you so much. X

Hi ladies, I hope everyone has had a lovely weekend? It’s test day for me in the morning but I’m already convinced it’s going to be a BFN 😞 does anyone else get that dread when they know they have to pee on a stick?

Me and the hubby ventured to our local pub for tea (dinner if your not northern 😂) & it was so nice to out out, even if there was lots of reminders that the world is still a bit crazy right now. Anyway we got talking about what’s next if superovulation doesn’t work - does anyone know if you can do IVF alongside Dr S’s treatment plan? Or is it better/easier to find a clinic that does immune treatment too?

Xx

Kept meaning to check in, but work has been mental. Finally caught up! Phew.
@HoldingOn2Hope, I'm so sorry you had to go through this! It sucks! I was concerned reading about Dr S's "overestimations" and I have to say, it does make me question if I should go ahead with him. Travelling 8 h (both ways) 5x for a treatment I don't have trust in makes me uncomfortable. I also get car/train sick at the best of times, I can't imagine doing that whilst preggers. Your experience has strengthened my worry. I'm at a loss of what to do. I'm considering second opinion with dr closer to home (perhaps Dr gazvani), but that would mean delaying treatment another month.
@Wishing5tar, I'm doing exactly that, a frozen embryo transfer and have Dr S plan on the side to my normal treatment.

Been taking hydroxychloroquine for a month now. I have only one side effect. It makes me batshit crazy. I nearly lost the plot today at my poor husband for making lots of mess during a diy job. Banged the door and shouted I'm not doing the IVF! This is just one of the crazy things. It certainly made me very emotionally labile. I'm dreading to think what will happen to me on both pred+hydroxy. My anxiety is also through the roof. I had a smear test the other day and I'm convinced they will find something abnormal!

On top of all that, my work seem to think I will not be able to shield and will have to be at work, whilst on pred as the rules may change soon regarding people on immunosupression. Dr S specifically told me I will have to shield .

So this is how stressful my week has been. And I'm supposed to be relaxed and zen before this ivf malarkey!

Hope you girls are having a better time.

@Jorun Sorry to hear you’re having a stressful week. I hope next week if better for you. Talk of coronavirus is definitely anxiety provoking, especially when thinking about taking prednisolone, with not knowing what is going to change and when, and also all the talk of a second wave.

Relieved to hear what you said about Hydroxy making you emotional, just so it isn’t just me!! It sent me a bit crazy today at my poor husband!! I’ve been on it a week, the headaches have now gone which is good although still feel occasionally slightly dizzy and slightly nauseas. Prednisolone sends me even crazier so good luck husband then!!