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

Oh @DaniMERL 💔 is there no hope? How do you feel in yourself? This is probably a ridiculous question as we are all serial testers, but did you drink more that could be diluting the result?
I can't imagine how frustrating that must feel, my heart breaks reading your post 😥
This is probably too soon to think about, but one of the blood test results MrS said can cause very early loss, it is called 'TNF Alpha-TH1/TH2 Cytokine ratio' I'm sure you would have had the test already but maybe it was borderline or has changed? Might be an avenue for MrS to double check?
Sending fighting spirit vibes your way 💪

Oh poor @DaniMERL so sorry to hear that. Thinking of you.. Do let us know how you get on hun.. Take care... I'm not sure about the costs involved but private doesn't seem affordable for me. However miracles happen and on fast track too over there.

@chickjen good point! I freaked out one day when I tested and the line was real faint. It was mid morning and i’d drunk loads. I left it a few days and tested again on FReR and it was back again. I stopped testing after that fright.

@DaniMERL I'm so sorry to hear that. Just try to stay calm and positive this weekend. I know the waiting is awful. Let us know. Thinking of you xx

Hi all, thank you so much, your kind words mean a lot. It’s been devastating. The expectations were pretty high I guess. Feels totally ridiculous considering my period was only due today.
So I tested from 9dpo right through to today, all FMU. The lines progressed as expected to day 11. I took a test on day 12 (day of Intralipids) and it was a little fainter and I really panicked as I had to set off at about 7.30am to get to the 10am appointment. I didn’t know what to do. I took a second test and I’m not kidding, it was definitely darker - darker than the previous test and also than day 11. I felt completely reassured and figured the first test was a bit of a dud. It made the morning and journey to Epsom incredibly strsssful but I felt certain I was doing the right thing.
Then yesterday it was very light again- as light as day 9. I wondered if it may be something to do with the Intralipids but deep down I knew things weren’t right.
Today was confirmation for me I think. Fainter again with FMU. The irony is that a normal person wouldn’t have even tested yet. I would have just got a negative on a normal sensistivity test by now. So I’ve also blown all that money about 7 FRERs too.
Just gutted but trying to think positively. Still on the meds but I only took 4 pred today with a view to weaning off and I’m sure if things were going to work out by some sort of miracle, the slightly lower dose wouldn’t do any harm.

So second failure on the programme and I’m confused as to what will happen next. It’s easy for Mr S to just put this down to chromosomal issues with no solid evidence. Therefore justification for spending more money

@DaniMERL, I don't know what to say hon. Have you started bleeding then? Make sure you ask the nurses on the phone tomorrow what the next steps are so that you have got the start of a plan. That's the only way I can ever keep going on this particularly arduous journey we all find ourselves on. Keep the faith and remember that we're all with you and here for you x

@DaniMERL for what it's worth I think you did the right thing, you made the only decisions you could based on the facts at the time and gave everything you could to this pregnancy. I really hope MrS comes through with some good advice and a plan tomorrow. Unfortunately you are probably right that it will mean spending more money 😥 the way I try and think of it is when I am 50 and the chance has gone, would I miss the £Xs spent or at least know I tried everything I could. But the cost is another kick in an already cruel situation. Hope you are doing ok 💜

@DaniMERL euch its so frustrating :( I think next time you can consider the option of not having the intras until Day 6 or Day 7. Just don't tell the nurses or Mr S. I couldn't get to Epson for intras until a week after BFP and that was that! I wonder whether Mr S can advise whether there are any further tests that might be available to see if theres anything underlying the chemicals like chickjen mentioned? I am sorry you are having to go through this hun. It's so mentally and physcially tough. Let us know what happens next?

@KittyKatSmile wishing you the best for today and that you have a good recovery.

@Nixwix all the best for the nuchals!!!!

@HappyApple05 hope your doing well my dear and the Fragmin shots are going ok. How long do you have to take them for?

Love and hugs to all

Welcome @KittyKatSmile to this group of extremely supportive women!
Firstly, I am so sorry that you are going through this tough period in your life. Tougher because you don't know why the miscarriage is happening and it means trying protocols until one works. I also know what you mean by Dr S being a tad too blunt - I find it quite stressful when he talks in a rushed/pushy manner and I find it difficult to ask the questions I had thought of asking but feel nervous to do so.
I don't know how much the protocol under Dr S is costing you but I think it would be worth considering a second opinion on your case - I think Dr S solely focuses on the NK cell theory, when the issue could be sth else? Also I believe you went to the IVF clinic but didn't go through with IVF, you could have a chat and see if that's an option? And while all this is happening, please do look after yourself! You are the most important thing and I pray and hope you feel okay more than anything else. Pls keep us informed and hugs to you.

@DaniMERL I am so sorry. I don't know much about pregnancy tests, I only used Clear Blue. It's very frustrating and your post really did break my heart but you are also being very positive, strong and practical about this all. Do you think you could have a chat with Dr S about a different protocol or get a second opinion from someone else? i really don't know if the intras work, at this stage, I am trying whatever they say works, but I am really feeling doubtful, it's so expensive (more than other places) and I don't know why I have this feeling that it's a money generating product. I hope Dr S did have a proper chat with you about a structured plan moving forward and then maybe get a second opinion too. Sending you hugs and I hope this phase is over soon and you can try soon too and find a programme better suited for you.

@Chickjen completely agree with what you said in the last post, when we are 50, I want to say that I have tried as opposed to I didn't even give it a shot. :)

This post is now too long!

@HappyApple05 omg!!!!! So happy to hear your news! Congratulations! Exciting but I am sure cautious too? How are you feeling and what meds are you taking right now? So you are around 6 weeks! Amazing. Do you have an appointment booked with Dr S or any early scans at your nearest EPU? Sending you love and hugs! 

@Sunshineblonde1 you do have a way with words! :) I also wish I was as good as you but it's a talent not everyone has! I had my dating scan on Friday at the hospital - they did what all hospitals do - was good enough. So broke the news of pregnancy to my dad, in laws and a few close family and friends. Still keeping it hush hush till 20 weeks. And today with Prof at Epsom, which was very very thorough, followed by intras. Definitely pleased that I eventually agreed to stick to my appointment with the Prof. (Pocket feels very empty). Yours is on 27th, good luck! Have your Harmony test results come back? My husband found out the gender from the Prof (apparently he can tell now) but I chose not to know. I am weaning off pred and stopped clexane but been advised to start aspirin. Are you and your partner excited? Sending you lots of luck and hugs.

Hope everyone's weekend was well, anyone planning on doing anything for Easter? Or holidays booked? Xxxx

Also I never welcomed you @UnicornDust17
Happy to find you here! Have you had your anomaly scan yet? All the best! Hugs.

Hi all,
Thanks so much again for lovely messages.
Glad to hear of some success too. I love the updates.
So I finally got a pretty standard response at 5pm today, basically just saying can I go back to see Mr S in 2 weeks. I have replied to say I will if there’s likely to be a change to the programme that needs discussing but if not, I would rather just continue with the plan and not pay out for another consultation. Not sure how that’s going to go down but I feel annoyed everytime I think of the £700+ I’ve spent since December on wasted intralipids. Everyone including my OH tells me to make peace with the money. I know I need to get over it. It’s not the actual money as such, more the feeling of being taken for a ride.
Anyway, I’m doing okay emotionally I guess but The anxiety was quite bad last week and I was only “pregnant” for 3 days. It makes me dread next time even more. Am definitely struggling. It’s coming up to 3 years of this terrible RPL journey and it’s taking Its toll. I know it’s been more for others xx

@Nixwix, thank you for the kind words. The IVF clinic actually looked at my test results and said they would follow the same protocol because of my NK cells. That's why it was such a blow to lose this latest one because I thought once I finally got pregnant this time, we'd have cracked it. I think it may be to do with my partner's sperm as there were some anomalies but Mr S seemed to change his mind on what it really meant (and when we asked, they wouldn't answer if it was likely to be my NK cells or his sperm that was causing me to miscarry). We didn't really follow up (which is our fault but I was on so many drugs I think we were just trusting in that) and Mr S never mentioned it again in my follow ups. Although the last 2 times I saw him he also stated that my pregnancy was unplanned so I'm not sure how closely he reads his own notes!

We'll go down the IVF route in a few months if we haven't yet had success. I'm pretty old so I want to get this moving. The clinic have said I can do Super O so we'll give that a go.

What are everyone's thoughts on trying again post mc/D&C? I've obviously been googling like mad about people who get pregnant again straight after a miscarriage. Mr S would be pissed off but he's always pissed off with me so I think I can take that risk...

@DaniMERL I think you've done the right thing in stating when you want to see him. I feel the same way. What you could do to avoid the early intralipids is to not test early? It would work out the same as going in later for the intras but without the fear. Appreciate that is theoretical only as the fear stalks us all whatever we do. I personally hate having to test early, I'd much rather just see if my period comes.

Anyway, I'm sending baby dust and grateful thoughts to all of you. It's a beautiful day where I am and I'm not going to work so I'm going to pretend I'm a lady who lunches and go and enjoy my 'day off'. Back to work tomorrow otherwise I'm going to go out of my mind.

Take care lovely ladies. Sorry for the dissertation (this is what happens when you don't go to work!!)

@DaniMERL I had a chemical last year where I tested Friday evening (I didn't expect to be pg but wanted to be sure so I could have a drink) The next day I sat in the garden trying to relax and rest and look after myself but the fear was already set in and that was day 1! I remember thinking to myself even if this pregnancy goes the distance I will not survive 8/9 months of this crippling fear. It was actually even a bit of a relief when the tests started to fade. The latest pg the fear didn't set in till around 6 weeks, and the baby stopped developing around 6.5. I strongly believe the fear and anxiety are worst when the pregnancy starts to fail, like your body is trying to tell you. I even use it as a symptom now to know if I am going to miscarry. What I am trying to say is don't dread next time, you had anxiety this time, it doesn't mean you will again

@KittyKatSmile enjoy your day off in the lovely weather! I'm glad you are doing ok and on the road to recovery. If you can bear the thought of trying again right now I think that counts for something. I have always tried again straight away after early loses which happened naturally, but I don't know about D+C is there any extra risks of infection etc having sex again too soon? The advice professionally always seems to be to wait but there are so many success stories too of people falling pg next cycle.

@NixWix congratulations! Weaning off already, that has gone so quickly! How are you feeling, can you allow yourself to get excited yet?

@Chickjen thank you! I want to be excited but I can't. The scan went well, I was happy for a bit and then controlled myself. The possibility of sth not going well is always at the back of my mind. Hence I have decided to not tell anyone till 20/24 weeks. Don't know if I can hide for that long haha.

You are so right, the anxiety and fear are the worst. It's so crippling that it prevents me from thinking straight and make the right decisions at times. Yet I am amazed how women have the strength to cope with all, live the regular life, go to work, look amazing, smile and still look forward and upward. ❤️

Hi everyone, hope it's okay for me to join . . .

I'm on day 4 of my 4th donor egg IVF cycle - one chemical pregnancy previously (funnily enough, the one time I took prednisone empirically); six perfect blasts transferred altogether but my treacherous uterus snuffs them out every time.

I found out today that I have "higher level of simulated NK and NKT cells" - I'm not entirely sure what that means, but they're recommending prednisone. Soooo . . . hiya!

I'm confused about dosage though. My IVF doc has advised 10mg a day from day 6 onwards. But the doctor who did the blood test said 5mg a day then half that dose from embryo transfer onwards.

Which dosage should I take? What have you all done, with success? Thank you!

@RedPandaFluff welcome!

I have always taken 25mg, although not (yet!) with success.

Some of us (if not all, I'm not sure) are under the care of the same doctor, Mr Shehata, who is a specialist in recurrent miscarriage and its treatment. I don't know if he has a one size of prednisolone fits all approach but I'm sure the other ladies will let you know. We are also advised to take the steroids from the date of ovulation (I'm not quite sure how the days work in IVF so I'm not sure quite where you're at now).

Good luck with everything. Let us know how you get on x

Thank you for your answer, @KittyKatSmile!

I've heard of Mr Shehata - he seems to be a bit of a legend . . .

@RedPandaFluff
Hey! Welcome to this thread! Although I don't fall in the NK cell theory bracket, I have thyroid anti bodies and follow a similar program to others on here. I did the IVF and started Pred on the day after egg collection I think. I started off at 20 mg but after I saw Dr Shehata, he upped it to 25mg. At 12 weeks I am weaning off. Hope this helps! Xxx

Hi everyone just catching up on the thread. Hope you are all doing ok .

@DaniMERL how are you? I totally understand your frustration and feel terrible that you've had to endure another chemical. The journey can feel like such a hard flipping slog and in fact feel like your going backwards and further away for the goal at times. Well that's how I felt at times anyway. Any news on next steps? Thinking of you and sending positive vibes for the next go!!!! It can only be onwards and upwards from here!!

@KittyKatSmile hope you are doing well hunni and on the road to recovery. I think I was advised to avoid sex for a few weeks after the D&C to avoid infection?

@Nixwix so thrilled about your Nuchal news!!!! I can't believe your husband knows the gender and is able to keep schtum!!!! I don't think I could have held it in in fact I screamed it out at the top of my lungs when we found out!!! It was the only time I've actually allowed myself some unadulterated no holds barred excitement and pleasure in this journey so far. Harmony and Nuchals all came back textbook perfect. THANK THE FRIGGING LORD!!!! I was shaking the entire way through the Nuchal. All I can say is if anyone has the opportunity to see Professor Akolekar you will not be dissappointed. It was the most thorough and professional diagnostic scan I have experienced in my life. No stone left un turned. We booked to see him again at 21 weeks we were so impressed. He is quite the opposite of Mr S I would say and extremely thorough and informative.

@Chickjen hope you are settling into your new home and building some strength up enjoying your time out to focus on you [big grin]

@RedPandaFluff a very warm welcome to you!! I hope you find the thread of great resource and support!! I think us ladies on the Shehata plan are all on 25mg of the pred or thereabouts. Good that the NK theory is gaining traction elsewhere though. That is reassuring to hear!

@HappyApple05 hope your well my dear, thinking of you!

Also ladies, I came across this book recommended by a fertility specialist. I have not read it myself but it seems to be well reviewed and maybe worth a read for those wanting to look into the bigger picture of recurrent miscarriage?

www.amazon.co.uk/Integrated-Approaches-Infertility-Recurrent-Miscarriage/dp/1848191553?tag=mumsnetforu03-21

Much love and hugs to all x

@Sunshineblonde1 thank you love, I was so nervous too but touch wood so far so good. So so pleased about your nuchals and I just loved your no holds barred excitement!! I am so tempted to know but also keen on that element of surprise. Always torn haha. I couldn't agree more about Prof Akolekar. I have seen so many doctors in the last 2 years yet our time with him has been the most valuable and worthwhile. He was thorough, detailed, gave us all the information and answered questions with pleasure and ease. I asked myself after the nhs scan if there was any point to going for a repeat but I am just so pleased my husband insisted because my mind is very much at rest cause of him. Yes, I am seeing him at 20 weeks too! Highly recommend him. You are right, Dr S is quite the opposite but I think I have realised he is someone with whom you just have to be persistent, along with his assistants. I think he has low threshold of patience since he sees so many people on a daily basis. But once prodded, he does talk through everything properly.

Suffering from broken sleep at night atm. Ugh! Hope others are well!

Hey @nixwix I’m in total agreement with you. And I have the broken sleep too 🙈 oh and a dull headache, either that’s tiredness from the short sleep or I was wondering if it’s a side effect of weaining off the Pred!?! Xx

Hellooo lovelies,

How are you all? A very warm welcome to @RedPandaFluff I'm on 25mg Pred with Dr.S

I've been staying away due to Nausea and tiredness. I noticed blood tinged mucus a few times. Not sure, if it's because we slept together or may be due to swimming 3-4 times a week. Slowed down now. So had a scan done yesterday as I was scared. It showed Preg and yolk sacs and the nursers mentioned that it looks right for 4-5 weeks. And going back in mid april for viability scan to check for HB.

And I'm feeling sore by inserting cyclogest through back door now. Alternating is a good idea? Any suggestions please... It's quite hard to cope up with nausea at work.. struggling... But feeling good about it for the first time thinking it's a good sign.

@Nixwix and @Sunshineblonde1 hope you feel better soon hunnies and wow very happy for you guys - weaning off.. yay!

@DaniMERL and @KittyKatSmile how are you getting on dearies?

@Chickjen hope the house is getting changed to your taste and you must be very close to getting on with the protocol now..

Sending lots of sticky and positive vibes and plenty of baby dust...

XOXOXO
HappyApple