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

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

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

@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

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 🤣

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!)

@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

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

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

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?

Welcome @KittyKatSmile I'm so sorry to hear about your loss. We are all here to walk with you in this journey. And please do not worry.

Wow @Sunshineblonde1 really exciting news... Very happy for you..

I'm sorry if I have missed any posts, currently working my way backwards.. To cut my story short, I took my Preg. test today expecting to see a BFN as I'm due my period today. However it turned out Positive and clear blue shows 3 weeks +. I'm worried as I haven't taken steroids this cycle during ovulation and up until now as my OPK only kept showing flashing smileys for 7 continuous days during my O.days, then I gave up testing and assumed I didn't ovulate this time. Usually flashing smiley lasts only one day in my case and then I get static smiley.

I also have to be on Fragmin, emailed the hospital today. Will hopefully get their response on Monday.

I started Pred as soon as I got the positive result this morning and wont get this anxious if I had started it when it showed 1 to 2 weeks. Any advise / suggestion would be very much appreciated ladies. My heart is pounding right now after 3 continuous m/cs.

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

@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.

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

@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

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

@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

Wow @HappyApple05 that is such good news, if the dates on the test match your dates, or even a little ahead by the sound of it, then all is on track so far and can only improve by starting the protocol.

@KittyKatSmile I am just a complete wimp that over thinks everything and then bottles it up! Thank God for the lovely calm practical ladies on here 😀

Don’t underestimate yourself @chickjen your incredibly strong and with an analytical mind 😘💐 Nothing wrong with weighing everything up and giving it all a good mull over - that’s how the best decisions are made 😋 xx

@Sunshineblonde1 @Chickjen @DaniMERL Aw.... you sweet ladies, thank so much for making me feel better :-) Your words meant a lot to me. Helped me to think logically and move forward. Got a bit of nausea now.. right after BFP.. Is it just in my head? ha ha... I realised there is no way I can go back and start taking the pred from week 1.. ha ha.. so doing my best now, and this is the time we are left with to react.. Isn't it?

I did yoga and went swimming last night, it did the trick for me and cleared my mind from anxiety. Feeling calm now and keeping positive as I always do :-)

@KittyKatSmile I was on Pred for 3 cycles too and didn't fall preg then, happened when I skipped it this month. And you know the rest of my story. Don't worry too much hun, take care of your health for now and once things clear up, you'll be ready for a fresh start.

@Chickjen I think these thoughts are coming up from the frustration we've been through in the past years hun... not surprised. You're int he right place. Try not to think too much and move forward would be my suggestion. You have got a lovely house now, tune it to your taste and before you realize you'll be there hun. Time is a healer and killer based on how we take it. In our situation, it's best used as a healer and to get us physically and emotionally prepared for the forthcoming.

@DaniMERL wishing you all well hun. My FR rapid results test came out faint too. I thought this isn't right as I was expecting a negative or I'm in week 1 or so.. while clearblue digi displayed 3 weeks+ Faint or strong, it doesn't actually matter hun. Keep positive and relax, things will fall in place.

One tiny advice to everyone - Miracles happen if we trust!!

Sending plenty of baby dust and positive vibes to everyone here.. you are invaluable :-)

XOXOXO
HappyApple05

@HappyApple05 I'm so happy for you, congratulations! And very inspired by your story. I did go back to see Mr S after 4 months on the steroids; looking back I don't know why I didn't make the point that I wasn't getting pregnant and could we try something else?!

@chickjen I think we all go over everything until we are driven mad. How are you feeling now lovely?

The clinic called me today (I think they were getting worried by the tone of my emails "I don't think you've given me enough information to make an informed decision") and I've got a plan now. They have also said that Mr S won't want me to wait so he'll fit me in somewhere. At the moment I never want to see his slightly sinister face again but give me a fortnight and I'll be back....! (We don't think he reads these posts do we?!)

D&C on Monday. Am now just fighting the urge to drink all the wine in the house. I don't think that's going to help so I'll resist.

Ladies, thank you all once again. I'm so pleased to have found you and I'm wishing you all so much luck and good wishes x

@HappyApple05 so glad you have found your Zen again, that is your strength 💪

@KittyKatSmile you are so strong! I would totally be having a wine if I was you, so pleased you have a plan now to focus on while you deal with a horrid time on Monday 😩 I hope MrS is too busy spending our money to be reading our posts, I have to say he is a dream compared to the horrid leachy consultant I saw on the NHS, although the thought of him doing the scan is too awful to contemplate 😱

I have actually made plans to see some family next weekend who I haven't spoken to in a few years, it is the first claw back into unisolating myself and it is only due to the strength I have pulled from all of you

@Sunshineblonde1 you are so good with words, I wish I could write half as well as you! 💌

@KittyKatSmile lots of love and hugs to you.. I came out with a smile from my last d&c when the nurses brought me down to my room. I felt so relieved.. They were actually surprised at me Come back revived hun.. I suppose you were emotionally blocked when you went to Dr.S, analytical mind gets frozen in those situations I feel.

@Chickjen wow... Very proud of you... That's beautiful.. Life is too short to miss things like that.. I bet you'd return home with your heart filled with joy after catching up with them.

And well said chickjen, I love reading sunshineblonde's advise, the way she writes is fantastic. Great quality for a mum to be - to easily convince the little one 🌝

You sweets, have a lovely weekend..

XOXOXO
HappyApple05

@KittyKatSmile you really made me chuckle over your comment on the sinister Mr S 🤣. I have to admit I was slightly perturbed by his manic smile [big grin] and I swear he doesn’t he even listen half the time 😂 however, after learning about how hard he works (often pulling night shifts and emergency surgery before seeing us at his private clinic in between flying around the world to speak at conferences and running his Harley st clinic) I found a renewed feeling of gratitude that he has bought this protocol to the UK and was able to pick up some fairly basic issues I had which just seemed to be beyond my NHS gyno 🙄. I truly believe I wouldn’t be this far without him and I have everything crossed that the same will apply to you now that you’ve cracked the whip on them and they finally seem to be responding 😘He’s not one for tea and sympathy but he is a symbol of hope. I hope he gives you the treatment you deserve moving forward.
All the very best for Monday hun, make sure you slather yourself in no holds barred TLC for a minimum of two weeks after 💆‍♀️😘 Eat and drink whatever your body wants! I took a holiday! Take some time to heal. Let us know that all goes well. Like @happyapple05 I felt like a dark menacing cloud had lifted after my D+C last year. You can then begin to move on.

Awww @chickjen and @HappyApple05 you sweet things. You made my day!! 🥰 I tend to warble but I’m so glad we can all be of support to one another and keep that positivity going. You’ve all helped me tremendously too. 💐

P.s. @HappyApple05 your nausea is right on track and a good sign 🤩 I’m literally doubling in size by day at the moment 🤪 I’m going to copy you and start swimming too. What’s the next step for you, do you have an EPU scan?

Have a lovely weekend all ☺️

@Sunshineblonde1 awesome.. Swimming actually revives me.. And I go with my son, we do some laps and a lot of play.. If you come across any crazy mum doing hand stands and learning to dive in the pool (not trying after BFP) that would be me.
And I read swimming helps with sticky blood cells.
I'm sure would want to go back quite often to the pool. Try to avoid busier times if you could hun.

🙈 My nausea is on and off at this stage.. At work, it overrides me a bit, but in the restaurant yesterday, I was chucking down everything and no issues😁

And I managed to get my Fragmin injections from the hospital yesterday evening. Felt very stressful as I was only given 30 mins to go there and collect it, otherwise it would have been on Monday. However I'm very thankful that they arranged for it rather than dragging it, myself being with NHS.

Took my first injection last night😊 doing what we can... And re scan, I was asked to go in April mid for my 6 weeks one. I didn't push to ask for an earlier one hun, not sure why I didn't think about it. Love you loads dearies...

XOXOXO
HappyApple

So it looks as though I am having a chemical pregnancy. The lines started fading dramatically yesterday. It’s been a really hard week and considering this happened before I feel annoyed that I paid for the Intralipid so early. I’d still be within 7 days next week and would have known by now that it probably wouldn’t have been worth it. The nurses are speaking to Mr s about it on Monday hopefully.

Oh @daniMERL, I’m so sorry to hear that !!!🙁 is it fading on the FRER? Mine faded on a cheapo one.
They do seem keep to get us in for intras ASAP don’t they. I think I went on day 6 and got told off.