Immune/NK issues - aka Pred Thread no. 22!

@kittykatsmile wow your a pro and sounds like you have all your ducks in a row for this next try. Sadly it’s a bit of a numbers game, and we need a bit of luck too. I’m rooting for you and wishing you all the best for the next step of your journey xx

@daniMERL I had the same with the freaky faint line test too, I was beside myself. Don’t fret. All will be ok 👌

@HappyApple05 omg I can’t tell you how happy i am for you!! I’ve been thinking of you and so pleased to hear your good news. That’s one hurdle down. I totally get it’s such a scary time. The jubilation of getting the BFP followed by the worry! It doesn’t stop btw just have to learn how to manage those thoughts and keep positive until you have physical evidence of otherwise 🛑. Don’t fret too much about the steroids. I took them from BFP. And baby is doing very well! You would have had steroids in your system from the months you were on them anyway! I didn’t have any. I know in the past Dr S has told people to have a month break from them and they fell in that month. I know it’s hard but try and put negative thoughts out of your mind for now and just crack on with the protocol. All will be well my dear. Can you go and get an early scan from EPU? Xx

@HappyApple05
That’s crazy news! Congratulations.
I’m not sure what advice go give. Have you contacted the clinic?

@KittyKatSmile
You pay for letrozole which is pretty cheap. Take a couple of tablets from day 2-7 (depending on your plan the dose and days can vary). Then you go for a scan on about day 10 so they can check your follicles. I had 2 mature ones, one in each side. They give you a trigger shot of ovitrelle there and then or to take home and do depending on how ready your follicles are. You then have intercourse from next day for 2 days.
The first cycle works out to be about £460 including trigger, excluding letrozole but then it’s cheaper for the scan (maybe £300?) each time. Obviously we have conceived first time but I do know of others where it’s taken longer. I was sceptical and surprised it worked.

I am still full of anxiety. Just before setting off for treatment this morning I took another FRER and it was fainter than yesterday’s. Totally freaked and didn’t know what to do but then took another and it was much darker. It’s planted the seed in my head now. Last time I had great progressing test lines and thought all was okay. I only lost symptoms a few days before my scan and then there was no evidence of a pregnancy.

I had the intralipids and met 2 women who are doing well - 1 at 10 wks and another at 6 but this is her 2nd baby on the programme.

Thank you @Chickjen. I saw them sorting you out during my earlier stalking session (maybe around 1:30am!). My thoughts are with you, sounds like you've really been through it.

I've had every blood test going. High NK cells, think I'm on the complex protocol. He said I could go down to 20mg of pred, have previously been on 25mg but I rejected that only to come off them altogether when the IVF clinic suggested it. I actually 'felt' pregnant immediately this time (my boobs were so sore!) so I could have taken the steroids from then. Guess you're just never going to know...

Can anyone shed any light on what happens with Super O and what the costs are? (I've actually got a load of the old drugs from when I froze my eggs pre meeting DP so I could just do it myself :-) )

Thanks again ladies. You are keeping me sane x

Welcome @KittyKatSmile I am sorry you find yourself here, but you have definitely come to the right place. These ladies sorted my head out earlier this week when I had a wobble, it is sooo much better to talk to people who know exactly how you are feeling.
Have you had all the preliminary immune/chromosome blood tests? Could you try a lower dose of steroids or taking mid way from O to BFP?

Thank you both so much. I was feeling really nervous about posting but your replies really mean so much to me. Just knowing I'm not alone is huge.

I'm going to start taking the hydroxy straight away instead of the steroids, @DaniMerl your story will give me so much hope.

We did have the sperm test; it wasn't the best result but subsequently Mr S said it wasn't really that bad (more advice that just sort of makes me uneasy). My partner took condensyl and is now due to repeat the test so we'll see. They weren't really able to quantify what could be causing the miscarriages, me or him so that's another great unknown! Strangely Mr S didn't mention this on MC 4; he put the blame squarely at my door! I'm already taking ubiquinol.

Good luck to you both; I'll be watching your stories with hope and crossed fingers x

Dear @KittyKatSmile firstly a big welcome to the thread hunni, I am so sorry you find yourself here but you are in very good company with many ladies here to support and guide you if you need it. Sending big hugs and love.

And so sorry that you have gone through such a henious journey so far, you are incredibly strong and resilient. My heart really ached when reading about your 4th miscarriage, no words can describe that loss. Life can be so tough and when you are going through hell, you just have to keep going knowing that it WILL get better . I hope you find this thread of huge support.

I saw you mention about the D&C, I was on aspirin and fragmin when I had mine last year and the hosp still operated. I've not heard of hospitals not doing them because of the size before or because of aspirin? I was just told to stop before the op. Mr S can be so very blunt, it takes getting used to doesn't it. I chose to think the reason that he has to be like that due to the nature of what he is dealing with everyday - I guess its a way of protecting himself so he can do his job? He sure could have a better bed side manner though. I am sorry he had no words of comfort for you when delivering the bad news. I received the same actually on the NHS - who I found to be completely incompetent. In fact one nurse dared to crack a joke and laugh when they told me the bad news last year!? Just awful :(

Have you asked Dr S whether there is an alternative to the Pred you can use as I asked before and he said there was? Or perhaps look to speak to Prof Quenby for another opinion? There are always options hunni. I have faith you will get there in the end. Did you have the egg reserve and sperm comet test? Mr S's plan unfortunately will only support viable conceptions so no matter what we do those that aren't viable will always fail. Taking Ubiquinol could help with that. I know that is no comfort right now to you but I didnt take the Pred until BFP either. Luckily he didnt tell me off. And so far this little miracle baby has stuck.

Sending you a massive hug xx

@KittyKatSmile
Sorry to hear all of this. He certainly does have an abrupt manner and from what I’ve heard, displays his frustration openly with people who don’t follow the plan to the letter, and I think taking steroids from ovulation rather than BFP is a big one for him and also the main difference between him and others. Having said that, if you are having such side affects, they ought to be listening and helping you.

I had a very early loss in Jan - the first on the plan and we fell on cycle 5 of trying. He put me on Hydroxy then and March was our first attempt. We also opted for SuperO as I’m getting v impatient. All I can say is so far so good as I have obviously conceived quickly at the first attempt. However, I am not even 4 wks yet so I’m obviously very anxious about how this will go! Also don’t like the idea of paying out for Intralipids again for no good reason.

All I have to go on is the many many success stories that I constantly read. They keep me positive.

Happy to chat more xx

Can I please join you lovely ladies? I've never written on one of these in spite of stalking them obsessively. I'm in the middle of my 4th miscarriage, waiting for it to happen naturally or go for D&C on Monday.
I had 3 MC in 5 months at the start of last year before seeing Mr S. After I started the steroids, I just didn't get pregnant and I had horrendous withdrawals every month. I then went to see an IVF clinic about my options and they told me I didn't really need to take them until BFP. That made me feel a lot better and I got pregnant within 2 months (I think) of stopping. Started the steroids again at BFP, had the first intralipids and then the first scan where there was no HB. Mr S was pretty blunt: you're probably going to have a miscarriage, that's because you didn't start the steroids early enough. Nice. Went back after a week. He just said 'it's bad news', told me there had been no change in a week and to go to a hospital for a D&C. The hospital scanned me the next day, told me they couldn't do the D&C because of the size (which he would have known) and also because I'd been taking aspirin (which he would have known). They also told me the baby (their words, it was nice) had doubled in the last week. I've now booked myself in for a random private scan on Friday just so I can see for myself and grieve properly.

I feel so let down by Mr S and his manner. I really feel like I can't trust him. He didn't give me all the information I needed to make a decision.

I also don't really know how to go on from here. He has suggested different drugs this time - hydroxychloroquine. Does anyone have any experience of this? And can anyone tell me about Super O please?

Sorry for the long post. It's 2am and I'm sweating with the start of a pred withdrawal beast of a headache. Life is great. Thanks for listening (if you're still here!)

Don’t stress about cycle days. Just do the baby dance a day before you are due to O, the day you get a static smiler and two days later. Repeat 6 months.
If it doesn’t work you can try Super 0 😃 trust me Dr S wants you preggo ASAP. In his words ‘I can help get you pregnant’ haha - my other half’s face when he said that 🤣

@chickjen time out is a god send. I’d definitely use the next few weeks to focus on you 😄 don’t stress about any decision. It’ll come ✌️ At the end of the day we all had our reservations and then just bit the bullet and moved forward 🚣‍♂️ don’t forget if you start this journey you can also stop at any point - it’s in your control. And I think you’ll find the protocol easier than it is made out - which is initially very overwhelming!!!! Sending positive and energetic vibes Hunni. You got this!! Go great yourself. Cook your fave meal, listen to podcasts, have a mani 💅 whatever makes you feel good. You deserve it 💁‍♀️xx

@DaniMERL good luck for the intras, i think it would feel too early for me too, but presumably the sooner the better 👍

@DaniMERL I think you hit the nail on the head! I was feeling so much freer taking a break and forgetting all about cycle days, that lead me to start thinking about stopping altogether, but the more I thought of it the more worried and confused and stressed I got, so actually deep down I guess the will is still there.
And as @Sunshineblonde1 says I was totally paralysed by indecision. I will see the gp, either she will help or she won't, and then I just have to throw myself into the hope of DrS.
I am so glad you are all here, I have a renewed fighting spirit, I do want this and it's only a couple of weeks till I can get started 😎

*controlled by my cycle day

Ah @Chickjen I see.
Well I kind of know what you mean but I think you can’t really control much of it. It’s also likely to be a bit of self preservation too. I have sometimes wondered the same and even recently, having had an enforced month off, I’ve found myself feeling a lot more content and it’s been great not counting the days and having life and my mood controlled my cycle day.
But I guess you just have to follow your gut and if you find yourself still cautiously proceeding then it probably means you still have some will and fight left in you.
And if you put all of this diagnosis and treatment aside, you’ll find many women and couples have a lot of doubts about whether they really want to be parents or not.

I have Intralipids booked for thurs - it seems so soon/early

@chickjen that’s completely understandable. Take your time and listen to your instincts. The great thing is you are in control of this decision. You have the tools and treatment plan now if you want to take that route. I think after your appointment with your GP things may be clearer 🙏 in the mean time and if your unclear take some time out and just focus on other things until the appointment. Stress can paralyse the brain when it comes to decision making and can cause it to over analyse xx

Yay @DaniMERL that is great news 😀 I will keep my fingers crossed for you 🍀 I am just at the beginning, I have a diagnosis and treatment plan but because I have just moved into a house which needs a lot of work I delayed starting yet.

@Sunshineblonde1, @Nixwix thanks ladies, my biggest problem is me I think! I have a thought in my head which keeps getting louder, do I actually want a baby? I know I used to, it was a real urge, now that has gone I keep thinking now I have my answer to why I should just walk away and save myself any further heartache. But I can't. Maybe I am just stubborn or maybe the urge is still there buried under 3 years of frustration and disappointment. Either way I need to crack on, I have never been good at waiting and I always over think things.
One day at a time. 💪

@Chickjen as I was reading your comment, I felt, man do I not feel that way too sometimes? I am sorry you going through that emotional roller coaster, we all do from time to time, even when things go well, because you constantly fear for the worst or just don't have the energy to keep going sometimes. Is there anything in particular that's worrying you? It's going to work out, have faith! Easier said than done, but try to keep distracted when you feel down, I watch funny things on Netflix or amazon 😁

@DaniMERL yes yes, fingers crossed for that BFP!

Wow that’s good news @daniMERL! 🤞

Hey @chickjen lovely to hear from you love. Are there any thoughts in particular that are causing you the most torture or stress with all this ? You’ve got a lot on your plate at the moment, and on top of that feeling like your an emotional rollercoaster - your not alone I think we all feel that way too 😘🎢 can I help ease your thoughts in any way?

Xx

@chickjen sorry to hear. Where are you up to with all this, I have lost track.

Yeah I tested yesterday and today and was anxious about the trigger shot giving a false positive and wanted a comparison for this morning. Both have come back positive but today’s is slightly darker. So it’s good news for now but I’m being super cautious. I hate this bit.

Oops didn't mean to send that soon!

Are you able to relax a bit now?

Good luck @DaniMerl is it today you can test?
Good luck to you too @Megan234 it is catch 22 I guess, you have the extra appts and shot to guarantee ovulation but the appts themselves add extra stress and worry! Hopefully it will be worth it when this cycle is the one 🍀

I am struggling at the moment. One minute I am really busy and motivated and organising 10 things at once and the next I crash and feel like my heart is broken and nothing, not even a baby, will ever fix it. Repeat that cycle 5 times a day and you're left with an emotional wreck. I have a gp appt at the end of the month to talk through the treatment plan and see if there are any bits she might be able to support/prescribe and then I think I just need to crack on before I torture myself any further.