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

@ginandtonicformeplease I personally wouldn't worry too much about the extra 2 days. I don't even know why I was on the clexane and I was desperate to give it up. So exciting that you're about to wean. I got my face back after getting off the pred as well which I was super happy about!!

Hi Ladies, Happy New Year to you all. I really hope that 2020 is going to be a good year for us.
For those of you who are under the care of Dr S and tried for months without out success to conceive on the pred / progesterone plan, did you go back to see the Dr at any point and if so after how long?
Does anyone know under what circumstances he will put you on the super ovulation programme?
I'm still having a nightmare tracking my cycle and I'm sure the stress is making it worse, I eventually got my period last week after 43 day which has never happened to me before.
Thanks

@Eeviee I don't know the circumstances under which he'll put you onto super O although I think he was going to put me on at the time I decided to part ways with him so I think if you go back, he's quite likely to put you on if you push for it...

Thinking of you.

@KittyKatSmile thanks, it's just I have to travel down from Scotland so it's a big additional cost for a consultation of he just tells me to go away and keep trying. Hope you are well x

@Eeviee. Oh that is a pain. Could you maybe speak to one of the nurses on the phone? Or email them with your concerns and see what they say?

Good idea, I will try the nurses. Thanks x

Hello ladies

Hoping 2020 is kind to us all :)
Update on me:
Had a great Xmas, forgot about ttc for a few weeks and guzzled G&T's instead :)
Went away to Paris for new year and had a fab time at Disneyland.
And then it hit me when I got back that it's been exactly a year since I was going through my 2nd mc and I'm still no where near to having a baby!
On my 2nd round of letrezole (day 5 today) had a call from Dr S nurse and he wants to see me on day 8 to see how I've responded to the letrezole.
I was reluctant as was seen on day 9 by Dr Jan last month and told to abandon cycle as follicles were too small. However nurse said Dr S would like to see what's going on at around day 8 and if he's happy will give me the trigger injection to take home and do myself.
I'm also on Progynova and had been getting headaches with it. It's either that or the letrezole by headaches only started yday when I took progynova.

Congrats to all of you who have had bfp's and successful scans. Xx

@Eeviee Dr S put me on SO straight away, my history is 3 mc's and delayed fertility.
I don't see why he shouldn't put you on SO especially when you are paying for private appt's.
Xx

@HoldingOn2Hope thanks, we’re you falling pregnant easily pre starting the pred and progesterone? Do you mind me asking how the super ovulation programme works? Do you have to go to the clinic for shots etc? Not sure how that’d work with me living so far away. Or maybe I’ve just been missing my fertile time as my cycle seems to have gone haywire...
Glad you had a nice relaxing time over Xmas x

Happy New Year everybody! Sorry I disappeared off this thread, I couldn't find it...
Unbelievably, I had a BFP just before Xmas, and the line has been slowly progressing.... my 6 Week Scan will be this Wednesday. I am terrified! The anxiety has been so hard to deal with.
Currently taking aspirin, progesterone, Steroids and Clexane injections for APS and thyroid antibodies. Really hope they work!

@LockThatFridge - I don't know who advised you to stop trying for 2 years, but for what it's worth, my local hospital (Recurrent Miscarriage Clinic) also advised me to stop trying (for 3 months) to repeat tests.... however, I continued and got pregnant. I'm with a private clinic who said to ignore that advice, and they are now treating me for the antibodies. I'm 41 so couldn't wait either!

@NicLondon1 thanks for responding and congratulations on your pregnancy. I will probably do the same as you and carry on because I am of the opinion that my body will let me get pregnant once it’s ready and not when it’s told to be ready. It was the endocrinologist at my local hospital. The private consultant I saw when I was first diagnosed didn’t tell me that though so I’m going to pay to go back to him for a second opinion because I don’t have the time to waste. All he said is that the biggest problem when ttc will be implantation. I do wonder if the NHS have a different policy because of costs involved in treating pregnant women. I’m currently on propylthipuracil for the thyroid antibodies. Should I be pushing for anything else in order to maintain a pregnancy?

@LockThatFridge I'm afraid I honestly don't know! I am rather new to all this, only got my results last Autumn and nobody has really sat me down and explained any of it!
Just out of interest, did you have Hypothyroidism as well as the Thyroid antibodies? I was only found to have the antibodies, otherwise TSH/T4 etc were normal, so Doctor said I didn't need anything. Only the Fertility Clinic have prescribed the steroids in relation to conceiving. So I don't even know if it means I have some underlying syndrome... so weird.

Actually I would love to ask people on this thread - do Thyroid or Anticardiolipin Antibodies have repercussions for life? Does it entail taking blood thinners for ever, or being more at risk for strokes etc?

@NicLondon1 I’m also new to this and was diagnosed at a similar time. I have Graves Disease so I have hyperthyroidism. I don’t know how long I’ve had the antibodies for but I have dc already so presumably not too long. It’s only this time that it’s become difficult to conceive.
I’m not really sure on the long term implications. I felt massively fobbed off by my consultant who didn’t seem to understand that I need to know about it and how it works. He told me it wasn’t a big deal. It’s a big deal to me though because it’s my body and it’s affecting my fertility. From what I do understand, I will have it for life but it won’t always affect me and I won’t always need treatment. It may flare up again in the future but it might not. I think for overactive thyroids, the aim is to make them under active which is easier to treat.

@LockThe Fridge thanks. I was also told it wasn't a big deal and wouldn't be treated, except for people trying to conceive

@KittyKatSmile I can't wait to get off the pred and not having to use the lovely cyclogest anymore! Compared to last time though I haven't put on anywhere near as much weight from the pred - the ravenous hunger never turned up.

How far along are you now? I'm still paranoid something will go wrong.

@ginandtonicformeplease I'm 31 weeks now. For me the anxiety dropped considerably after 12 weeks and then even more so once I could feel Tiny Dancer jogging around (at around 16 weeks).

I was so delighted to get rid of those vile drugs. I'm now only on stuff for my thyroid, aspirin, vit D and recently something for the old heartburn.

@ginandtonicformeplease thankfully I haven't put on much weight either, definitely have a moonface but compared to others I have seen its not so bad plus i've been able to manage it with the beauty of makeup contouring ;). What will be your weaning protocol and how do you feel about stopping clexane at 12wks?

@kittykatsmile thank you for the recommendation of omeprazole, I've managed to get a prescription from the GP for a 2 month supply, covering me until I have weaned off the prednisolone. Did you find it was an instant relief or did it take a few days for it to take effect. I don't know how much longer I can take, it's put me right off eating anything (and I'm so hungry so feel sick a lot of the time) and my tongue is tinged with an orange colour, I look so attractive with my fat, spotty, hair face and now orange tongue. I am happy to be pregnant ... honest, it's just a lot to deal with. X

@MairMum18 I was taking it all along with the pred but then took it again recently and it worked instantly. Hope it'll be the same for you. If you still need it after 2 months you can actually just buy it in boots. Thank goodness. Hope you feel better soon

@KittyKatSmile you are giving me strength! 😍😍😍 Not only because you are 31 weeks already but also because you said that you were considerably more relaxed after the 12 week scan. I am so hoping for the same. I am literally shaking 24 hours before the scan and once I hear the good news my body is back to normal. Almost an out of body experience (AKA trauma we all had in our lives 🙄)

@zoe16 I've put a few pounds on, but that's because I've been eating too much toast - for most of 2019 I was really strict with myself trying to lose weight and now if I want toast I'll have it!

I'm on 20mg, and the weaning protocol is go down by 5mg every three days. At the end it goes to 5mg every other day. I really have had enough of the damn drugs. I travel for work and it's a constant worry that I'll forget something.

Hi All, happy new year - can I just ask for those of you who have done IVF alongside the pred treatment, is transferring 2 embryos more risking in terms of triggering an immune response than transferring just the one? Just for reference i have normal NK numbers but they are very aggressive and have lost each pregnancy at 5 weeks.

Wishing you all the best of luck for 2020.

Hi @Ultra26 I don't know that about transferring multiples. I had gone through all the pros and cons in my head but when it came to transfer day, they didn't mention it to me and just put one back in, which of course was my lucky little one. Does your clinic 'believe' in NK cells and will be treating you for them or will you be treating them separately? Just trying to gauge if you could ask them. I think some clinics also don't really like to transfer multiples, but that's just hearsay. Good luck to you x

@KittyKatSmile thank you for your reply. Well they don't necessarily believe in them but also don't dismiss and happy to treat alongside which is a relief. We are only on month 3 of Dr S treatment and will give it till Easter before deciding if we should go down the IVF route. The idea of multiples is very appealing after 4 losses but obviously not if the risk is elevated. Can I ask if you did genetic testing?