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

@PGJV yes, I was unsuccessful for quite a few months on his protocol after having been pregnant 3 times in 5 months immediately before. Another specialist told me that pred can sometimes interfere with conceiving. I stopped for a month, got pregnant, lost it and that's when Dr S told me it was my fault because I'd only taken the pred from BFP and not from ovulation. So some difficult decisions to make. I'm sorry it's not better news from me.

Hi @Eeviee yes, I spotted from 8dpo which was annoying. And my period was much lighter. I’ve read that pred and cyclogest make the uterus more choosy and stop unfavourable eggs implanting so it takes a bit longer to fall. Before this I got pregnant three times in six months but I think my body was just letting any Tom, dick or Harry implant!

@Eeviee and @KittyKatSmile thank you for your replies. I've managed to book an appointment for next tuesday to see on of Dr S's colleagues as its a long wait apparently to see Dr S and I am not ready to let go of next cycle as at the next appointment all they need to do is review my medication and prescribe more for the coming few months. @KittyKatSmile - were you on the same protocol as me? Thanks!

@KittyKatSmile @Eeviee it seems the general rule that exercise is safe and healthy during pg doesn't apply to us because of our mcs, but I just feel so much better when I exercise, physically and mentally. Perhaps i'll tone it down a bit and like you said avoid jumping and abdominal exercises.

Hi @PGJV yes I was with Mr S and this one was my 3rd cycle. He did originally say to come back after 2 months for a review of how the meds are working, but I had enough supply for 3 months so I thought I would give it one more month before booking, and that extra month was the lucky one 😀
I did take the day after O (not day of O) if that makes any difference. And when DTD I was literally telling myself 'relax, relax' because I think our muscles have to help the swimmers on their way so being tense I assume wouldn't help. And I think the protocol adds a certain amount of pressure for it to work asap, on top of our own pressures 😥

@Chickjen I do have 8 days worth of medication which is not complete but anyway I've got an appointment for next Tuesday so hopefully my next cycle wont go wasted. I was thinking about what you mentioned regarding starting it after the ovulation day on not on ovulation day. I will try that next month to see how it goes. Thank you for your advise on relaxing while DTD too!

I trust you are doing well though.
Thanks!

@Worried82 thanks, I’m only mid cycle though which is odd... Do you remember where you read that about pred makes utérus more fussy? Someone else told me that too, maybe that’s why it takes longer to conceive. (Although when I asked Dr S about that he dismissed it and said it wasn’t true! Even though it’s clearly the case for so many)!

@PGJV yep, same protocol as you.

@KittyKatSmile do you mind me asking, did Dr S change something in your protocol? X

Hi girls. Cycle 3 on the pred and another bfn. Again, mirroring what @PGJV and others have said, I was getting pg nearly every cycle before the pred and now, nothing! Thank you @Worried82 bc I do believe the pred is making my womb more fussy! So I guess that is a good thing and we just need to be more patient right? Better than consistently getting pg then losing them again.

I’m also going to try the pred from one day after ovulation. Maybe just 10mg initially or maybe just from BFP depending on how I feel. I have an appointment soon with my doctor so will discuss protocol for following months then.

@WeeGi I’m glad to see you back and I hope the counselling goes ok. DH and I nearly packed it all in today but then later decided to stick at it for another little while. But it’s getting to me. I feel we are so close and to stop now would be critical. There have been tears. Heartache. I feel we have a little bit of steam left somewhere...

@Wewin sorry for the BFN 😢 I’ve only just rallied after mIne. It’s so, so hard but stick with it, I have everything crossed that we’ll all get there 🤞I can’t remember where I read about it @Eeviee but this link is quite interesting if it helps... it’s more about progesterone making the uterus more choosy rather than the pred. And although I would love a BFP, I’d rather a BFN than another CP as they waste so much time. www.reddit.com/r/ttcafterloss/comments/5jfd9t/superhyper_fertility_getting_pregnant_easily_but/?utm_source=amp&utm_medium=&utm_content=post_body

@Eeviee for me to get pregnant and it to stick do you mean? I left Dr S after he told me it was my fault I miscarried the last time (because I'd taken the pred from BFP). He told me as he was telling me the baby had no heartbeat.

This one is IVF with a donor but the only change my clinic made to my/his protocol was the clexane and also some oestrogen but IVF does feel very different to trying it naturally anyway. Oh and I had intralipids earlier, so during the process rather than at BFP but I wouldn't recommend that outside of a controlled cycle like IVF...

@PGJV I’m on the same meds as you, plus hydroxy. ☺️ I’ve found it takes me a similar length of time to fall before & being on the meds - usually around 3/4 months. I try to think positively about when I fall & it being a successful pregnancy (even if it takes longer to happen) rather than hoping to fall as soon as possible & going through the heartache of another miscarriage and the several month long process before we can start trying again. I know that in an ideal world we would all fall quickly & make it to a baby in our arms but I’ve quickly learnt that isn’t how it happens for me unfortunately 😔 I recently said to my acupuncturist ‘if only I had a crystal ball that told me exactly when it’d happen (& go to term) then I’d be okay with the waiting.’ Maybe your body just needs time 😘

In terms of appointments, I always make sure I book my next appointment before I leave. So if Dr S says he’ll see me in 5 months time (or sooner if I fall pregnant) then I usually book the appointment for 5 months as its easy enough to cancel if you don’t need it ☺️

I hope everyone is doing okay? I’m currently 4dpo and trying my hardest to relax xx

@KittyKatSmile thank you for your reply.

@Wewin sorry you are going through the same too! It is really hard and I was in tears yesterday too! I hope you are holding up well though. I am planning to treat myself this weekend even if it makes me forget about it all for just a bit!
@Wishing5tar I totally agree to what you are saying. We all want a healthy pregnancy rather than rushing it and then having a MC.. also good shout on the appointments - I'll keep that in mind.

@Wewin thanks. Sorry to hear you're at a similar junction. I feel the same, if we can only find the strength to keep going this next few months it might work. I think the only thing that will give me the strength to do that is that we'll be trying something new. Whatever treatment I'm prescribed from Coventry will be a different approach, I couldn't keep doing the same thing and expect a different result.

I have my fingers crossed for you, I hope you get a good result soon. Xx

Theres been chat about coffee recently and I wondered what everyones take on alcohol is? I stopped drinking a couple of years ago hoping it would help improve our chances, but it hasn't and I feel like I would really like some sort of my old life back. So on my recent holiday I had quite a few drinks, but then felt terrible about it in case I'd damaged my eggs. I hear so much conflicting advice about it, but my consultant didn't seem to think it made much difference, but this is different to what others have said. It's so confusing.

In a bid to feel like a normal person again I would like to be able to enjoy a few wines, but dont know if I can do it without terrible guilt afterwards, given that if we continue on this journey this is our last gasp chance and I feel I should throw everything at it.

So, what does everyone else do in terms of alcohol? Xx

Thanks for your words of encouragement @Worried82 and @weeGi. I’m so sorry about your recent bfns too. We will get there even if it takes a longer time. My private appointment is later this month and I bet the RMC appointment will come through a week later. I’ll go to both if so. The private appointment will cost £500 including ultrasound plus bloods, additional tests, prescriptions are extra.

Re alcohol @WeeGi I also stopped drinking two years ago. Not for ttc purposes but bc I couldn’t hack the really really bad hangovers (even after one small drink). It interfered with my POTS condition. I have to admit that lately I’ve been really thinking about having some wine at Christmas though. All this has got to me and I’m thinking it will be fun and the hangover might be worth it. Hoping I’ll be pg though and it will remove that choice for me.

I have not done any research on alcohol and egg quality though. In my 30’s I drank quite a bit and it didn’t affect my ability to conceive or have a successful pregnancy. IMO you shouldn’t put your life on hold and if you want to have a drink
then do it and don’t feel bad about it. Recurrent miscarriages are very stressful and traumatic on us and our relationships and having a little bit of fun now and again can help our mental health and our marriages.

Hello ladies. Hope you are all keeping well? A question to those who have received their BFP on the steroid treatment - did any of you have any early pregnancy symptoms and if so when did they start? I'm only 4dpo and feel perfectly fine which is normal but wanted to know if I should keep a look out for symptoms or not as I have read that the steroids can mask symptoms. I guess I don't want to to start loosing hope for no reason. Thank you x

@Ultra26 nope, none for me where I previously had known almost straight away. Would agree that the steroids mask any symptoms

@KittyKatSmile thanks so much. Such a relief to know that. Hope you are keeping well x

Hi @Ultra26 it was the same for me - nothing. Just when I thought a symptom might be developing it would disappear again, it really messes with your mind!😕

@WeeGi giving up alcohol was something I decided I wasn't prepared to do, but I did cut down and made sure I stuck well within the government guidelines. I didn't drink mon-thurs and then drank around 8-10 units spread over fri-sun. I do believe trying to preserve yourself through all this is equally as important ❤️

@Wewin @Chickjen you're right about living your life and preserving ourselves throughout this. I feel like I've lost too much of myself. I used to love going out for a few drinks and a laugh with friends, but now I hardly ever go out, far less drink. It's good to hear your take on this as it makes me feel like I'm being too harsh with myself, and I need to cut me some slack. It started two years ago when I felt I needed to do something to take more control of my fertility situation, I started reading lots of books on egg health and seeing complementary therapists with lots of advice on health and nutrition. It served its purpose at first and I felt more positive, thinking there was lots I could do to help my situation. Two years later and its developed into an unhealthy obsession with everything from food and drink to only using natural cosmetics and cleaning products, being paranoid about inhaling second hand smoke or car pollution, and would even avoid inhaling peoples perfume or painting my nails etc. coz of the chemicals. My social life is practically non-existent now and it's all affecting my mental health. It's just tricky to get over the guilt of doing these things when I've believed for so long they would have such an impact, however I realise that if I'm going to continue with this journey I need to relax, put things into perspective, stop punishing myself, and find me again.

Really sorry for the long posts, but it's quite therapeutic for me! Thanks for listening! Xx

Really loved what you said @WeeGi. It sounds as if you’ve come full circle and have a good balanced perspective on things now. I’m an obsessive type personality so I know very well how enjoyable it is to take things to the extreme. Like you said, it’s definitely served it’s purpose and now you can see that it’s time to get back to having some fun again. It’s great you’ve got the Coventry treatment coming up too.

@WeeGi I know what you mean and it's so easy to lose perspective. I cut down on drinking (I probably used to drink too much really) and at some points stopped but then also sometimes got really drunk after having a BFN. I think you have to make sure you're still on project you. @Chickjen's idea sounds great and a good balance. Such a bloody tough journey ladies. Stick with it x

Just wanted to say a huge thank you to all the ladies on this board. You are all so supportive and kind and I truly appreciate it 💕
Recipe treat idea: chocolate protein powder, a banana and blend in milk. Pour into lolly makers and freeze. Really tasty and healthy treat.