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

[Chickjen]

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

@KittyKatSmile how are you doing? 🥰😘😘

Perhaps I got him on the wrong day but he made out as if the Cypriot drugs weren't safe even though it's exactly the same (I did my homework of course).

@MrsMargot I'm good! Look like an egg on legs but feeling pretty good. I have to work up to the last minute but I'm moving back to Guernsey this weekend so will at least be working from home for the last stretch and hopefully will be able to rest more.

@KittyKatSmile I am so so happy for you!! I cannot wait to look like an egg on legs myself! (😂😍💪). However, tell me please, are you still tired to the extend that you wonder whether you have narcolepsy? I cannot keep my eyes open. 😎

So so good you can work from home! How long do you have until you meet your little one? I am sending you all my good vibes! 🥰🥰🥰

@Ultra496 i know. I did quite an extended research myself. A friend bought some of her IVF drugs from Italy (she is not Italian). It is a minefield and can be expensive...

Can anyone tell me if they’ve been on only 5mg of prednisone and had success? I’m almost 9 weeks pregnant and have been on it since ovulation but it seems a very low dose! I haven’t been tested for Nk cells.

@MrsMargot the narcolepsy eased post 12 weeks or so although has returned a bit recently. It's a bit different this time round actually though; more like weariness than the bone tiredness of first trimester. I've also got carpal tunnel syndrome and feet like the elephant man. I have to say though that I'm finding joy in those things as I feel very lucky to be here.

Love to you all x

Hi All,

Can I ask what dose of Pred are most of you on?
I'm on 25mg only just started it a few days ago and it seems quite a high dose to me 🤔

@HoldingOn2Hope I'm the same and the first month was the worst for me in terms of symptoms but month 2 and 3 have been much better.

@HoldingOn2Hope I was on 20mg but I think that or 25mg are the standard doses I've seen on here

@Ultra26 @KittyKatSmile thank you both!
I keep checking the mirror to see if the moon face is appearing 😑 Have a party to attend next weekend and stressed I'll look weird. Feel ok these couple of days can't say I've had much symptoms.
But I'm on antibiotics for my sinus infection and painkillers too. I could open a pharmacy at home!

I'm finally weaning off the pred now - I'm 12+2. Stopped the clexane thank god, and very relieved not to have to take the progynova or cyclogest anymore.

I'm still terrified something will go wrong. I haven't had a scan for almost two weeks and my NHS appt for 12 week scan hasn't come through yet. I'm wondering whether to just go private for that - the problem with having spent so much money on IVF and NK cell treatment is that an extra hundred now seems like nothing, when in reality I know it's a lot I could use for something else. Argh!

@ginandtonicformeplease I totally know what you mean. The way I covered that gap was with the Harmony test as I had scans at 10 and 12 weeks with that. Not sure if you're still in the right window for that but of course that's loads more expensive than just a cheapy scan somewhere. Warning: I went for one of those last year and the experience of sitting in a chav strewn waiting room traumatised me (yes, I'm a total snob....!) Sending much love and hoping you'll feel better after 12 weeks.

@HoldingOn2Hope I am also on 25mg. I had the worst headaches when I started but got better after a week or so. The moon face came later (with a vengeance!).

@ginandtonicformeplease I am also waiting for my 12-week from the NHS. However I have had the harmony test already and I am doing the private 12-week scan at Dr S clinic. I would have to do a 12 week scan on my protocol anyway so I opted for the more ‘enhanced’ version. If that was not an option I would wait for the NHS (having had the harmony results and some peace of mind).

@ginandtonicformeplease @mrsmargot hooray we’ve made it! There was a time when I doubted very much whether I would ever reach this milestone but the people on here gave me hope. I’m 12+1 and have started weaning off all medications. Looking forward to stopping everything completely as I swear they make my nausea worse. I’m nervous that stopping will cause something to go wrong. I have my 12wks doctors appointment tomorrow, fingers crossed baby is still ok.

@HoldingOn2Hope I am on 25mg too, didn’t have any symptoms except for the moon face which came about 2-3 weeks after being on it.

Thanks ladies :)
I'm only on it for 10 days and will only continue it if I get a bfp so keeping my fingers crossed!
Do you just stop it if it's a bfn or reduce dose for a few days?

@zoe16 I know! Same here! I am starting the weaning on Sunday. And I totally relate to worry whether something may go wrong. Such an odd feeling. I feel reliant to meds but I am sure we will be fine. All the ladies here have followed the same protocol. 🙏🏻 Did you start weaning from day 12w0d?

@HoldingOn2Hope I was told to just stop if it was a BFN and continue if it was a BFP. I had a positive so I continued. I hope the same happens to you too! ❤️❤️

@MrsMargot thank you! Ok not feeling very positive as been very poorly and on loads of meds but let's see x

@MrsMargot started weaning today so 12+1...although I will have my last intralipid in about three weeks.

@MrsMargot @zoe16 I started weaning at 12w0d, as the clinic directed. I've got a bit paranoid that the drugs were all that was keeping it going, hence why I'm really worried that my 12 week scan hasn't come through.

@KittyKatSmile I went for a cheapy scan in Harley Street of all places, and it was the weirdest medical setting I'd ever been in - it was like they'd just plonked an ultrasound machine in someone's living room! If I go private I will be looking for somewhere else

Hi all, wanted to keep you updated. I woke yesterday with some spotting so immediately rang the early pregnancy unit, they managed to fit me in yesterday afternoon for a scan. All was looking good and I was able to hear baby's heartbeat, which was very reassuring. They don't know what caused the spotting.

Throughout the night I've been getting some sharp pains in the left side of my groin, from looking online it says it could be round ligament pain, are any of you guys experiencing this too?

Also I'm unsure of when to start weaning off the pred. It says from 12 weeks but my scan isn't until 12 weeks + 3 days. Do you think it's ok to stop before my scan or do you think I should just wait until the day of my scan to be sure of dates?

Quick update: I had my 12wks scan this morning. I’m 12+2, measuring 12+6 but all is looking great. However my “12 weeks appointment” with my doctor isn’t for another week. Is that too late to do all the necessary tests that are usually done at 12wks?

@MairMum18 so happy to hear baby is doing ok. I haven’t had the round ligament pain yet but I’m having pain on the top left side of my bum which I believe to be sciatica. I’ve always had back issues so not surprised if it is. Will confirm at my doctor’s appointment. You can start weaning from 12wks or a few days after, its really when you’re comfortable. If you feel better waiting for the scan then do that. I started at 12+1 and had my scan at 12+2.

Hi all, first time posting here but have been following for a while, it's such an interesting thread. I have high thyroid antibodies (on levothyroxine) and trying to conceive DC2. Had DC1 with my first ever ivf try and without steroids. 2 unsuccessful FET rounds later (one bfn and one mc) and my consultant suggested steroids if we want to try again.

I am reluctant as I have read it has risks for both foetus and myself (for example there may be links to diabetes and I might have a predisposition. Worried it may be a trigger). It's the long term effects I am worried about rather than side effects while taking them.

You ladies seem so experienced on this subject - am I worrying over nothing? Has anybody come across any literature on this?

I'd be taking 20mg a day and weaning after 12 weeks if all were to go well, so will be on it for 3 months, which I think is considered long term use. (I think?)

@KittyKatSmile thanks I think I won’t bother for now, I originally got 3 months of meds from Dr S clinic but I spoke to my GP and she’s happy to prescribe the steroid and progesterone based on his protocol which is great, I know I’m lucky as not all gps would do that. X

@HoldingOn2Hope I have been put on 25mg pred, think Dr S always uses the same dose but sounds as if different clinics differ. It BFN after 10 days you just stop it. I’m the same as you, on antibiotics too, keeping fingers crossed for lots more BfPs this January x

I mean lots of BFP in this group!