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

@HappyApple05 I personally am delighted that you are being so sick; that's a good sign (and apparently you then get a good baby. I'm sure that's science!) Even if it means we don't see so much of you. Sending much love.

@DaniMERL sorry to hear you're so anxious. @Sunshineblonde1 sounds spot on as usual (she's so wise!). Have you tried acupuncture? I am generally against anything like that (I'm an accountant so uber rational....!) but it's really helped me in the past. Remember that we are all here for you xx

@Nixwix, yay she's back! And with twinges! So happy to have you with us. It's so nice to have happy news to dilute the general misery (that I bring!)

@Chilliandlime yes, my friend is on that group so there's a fair chance you know her already! She said it's been invaluable to her. She put me onto another Facebook group but I don't like it as much as I like you ladies. For some reason the lack of anonymity really freaks me out!
(And treatment = IVF. OH decided he didn't want to try again after 4 miscarriages in a year so I'm going it alone. In all senses!)

Sending you all lots of love ladies x

@kittykatsmile yes I go regularly but as this pregnancy was a bit more of a surprise than usual I just had an appointment already made for this Friday. Looking back I should have contacted her and tried to go sooner but the anxiety really crept up on me!

Ladies - may I ask who Dr S is? I’m new here and have seen his/her name mentioned a few times. Thank you!

@Chilliandlime and @Thumbellini correction: it was a lonely path but now you have us 😀❤️ I felt very lonely and isolated too but now I have found you all who understand what it's like I feel far more able to talk about weather and what's on tv etc with people i don't want to share with. And agree 100% about the uncertainty 😀
@KittyKatSmile one hurdle down and onto the next at full speed 🎉 I hope it works out you can keep your holiday!
@NixWix so lovely to hear you are doing well, as KittyKatSmile said it really helps us you and Sunshineblonde1 are here giving us hope ❤️
@DaniMERL I have everything crossed for you 🍀 I feel we are similar with the anxiety and multiple chemicals. I really hope this is the one for you 🍀🍀 one thing that helped me was trying not to think of anything for one minute, it sounds silly but its actually really difficult when you are worrying. I don't think I've ever managed it during the day but at night it really helps get back to sleep ❤️
Hi @Chocapic he is Mr Shehata in London/Epsom and specialises in pregnancy loss caused by immune issues.

You're all right that it is a lonely path. IVF is lonely, and then miscarriages is even lonelier. I'm quite a private person so hardly anyone knows everything we've been through.

Has anyone heard of London Gynaecology, run out of the Portland? I'm booked in there for some recurrent miscarriage tests at the beginning of June. I think my consultant at the IVF clinic has done all his usual tests, and I just want a second opinion - and I don't really want to go to another fertility clinic, but one that specialises in women's health, if that makes sense.

I'm then booking myself into a yoga and detox retreat at the beginning of July. I've started dieting already, but I weighed myself today for the first time since my booking in appointment for my last pregnancy and I almost cried - I've put on more than a stone since then. Unfortunately I'm a comfort eater. I'd already put on a load of weight due to the steroids, so I've plenty to lose!

DH is religiously taking his vitamins and drinking his beetroot juice. I don't think he really knows what to say emotionally but give him something practical to do and he'll do it!

I just can't help but think that there's not really anything more that they can do for me - I've had the steroids, heparin, intralipids, but it still ended in MMC.

My clinic offered a free counselling session when we originally signed up that we never took up. I was considering seeing if it was still on offer - it's almost a year since it was originally offered but I didn't feel unneeded it then. On their website it's time limited, but we've spent so much money with them I'll be really pissed off if they refuse!

Sorry for the long ramble, and congratulations to everyone who's had a success!

@Ginandtonicformeplease I think you are far from the end of the road it is just a question of what to try next without breaking the bank. I still think it's worth a consultation fee to see if there is anything stronger than vitamins they can give your OH, if you can cut out the ivf that has got to lessen the burden. There are other immune issues and treatments other than NK cells and pred/intralipids too. I am about to start a course of humira and DaniMERL took hydroxychloroquine to name just 2. Have you thought of trying MrS?
I have not heard of the clinic you mention but if they look at a broad range of options it could be a good place to start to identify an area to concentrate on. And the spa retreat sounds amazing 😍
In the meantime you have us too ❤️

@Chickjen Thanks for the message, just feeling very down today about everything. I have had a look at Mr S, and my plan B if nothing is found by the dr I'm booked in to see is to take him all the results of the tests I've had to review. When we started this journey we were told by the NHS fertility nurse that it was unexplained infertility - as such we decided to keep trying naturally for a while before we had a private consultation (no IVF funding where I am). At the first private consultation the doctor looked at our test results and said he didn't know why we'd been told unexplained, I was very unlikely to get pregnant naturally as it was MFI. After that - a waste of a year - I always think getting a second opinion is good.

I just always thought getting pregnant would be the difficult part, not staying pregnant! I'm really glad I've found you all, although I wish we weren't all in this position

Hmm I see your dilemma @ginandtonicformeplease. Having just reminded myself of your TTC journey I can see that the focus needs to be on the MFI mainly but also that your NK cells may be making it tricky to hold onto any BFP. Like @chickjen mentions there are other routes alternative to the Pred which @DaniMERL and Chickjen have pursued. So that’s an option. What have the specialists said regarding your DH MFI? My DP was put on powerful antioxidants to improve his spermcomet results. I think a combination of factors helped there. Have you looked into epigenetics? The Fertility Nutrionist I mentioned before covers genetic panel testing. Google her - Angela Heap. She is often the last port of call for failed IVF and unexplained fertility patients and has great success rates. She offers free initial Skype chat / phone call and is very helpful. I considered her alongside DR S when I began my journey.

Oh darling it broke my heart to read about how your feeling about your weight gain. Please don’t be hard on yourself. Your body has been going through an incredible journey, prepping for pregnancy with the treatment and medicine let alone dealing with all these difficult emotions. Give that body a big hug from us all here !! It’s done a marvellous job of taking all that on. Look in the mirror and know that you have this under control. Acknowledge that this is the biggest you’ll be and that with the healthy diet, yoga and exercise you will soon notice that you will feel better about your changing shape. I did a yoga retreat last May and it changed my entire outlook on this whole journey. It will bring you the peace you deserve my love. Maybe ditch the scales for now and just focus on loving those curves and just being healthy 😘 this whole process is a huge assault on the body and mind we must show gratitude to ourselves and be forgiving of the extra weight after all there is good reason for it being there it’s not like we’ve just been greedy for months, the meds do reek havoc ! 💪💪 xx

Also what extra testing is this Gynaecology place offering? @ginandtonicformeplease

@ginandtonicformeplease we are here for the ups and most importantly we are here for the downs ❤️ Our individual circumstances may be different but I'm sure the stress and worry and the constant need to feel you are doing SOMETHING is shared 😥
I know what you mean about staying pregnant, when you think of all the factors that are involved in getting pregnant and growing a baby it is amazing it happens at all, but it does, literally billions of times, we just have to trust that one day it will be our turn

Is spermcomet the same as the DNA sperm fragmentation? My understanding of that (and I may be wrong!) was that the embryos were unlikely to have got to blastocyst stage and then survived to over 8 weeks if there was a problem with the sperm itself. I'm currently reading Professor Regan's book on miscarriages and from what I understand it's much more likely to be an autoimmune issue with me, judging by the stage I got to both times.

I hadn't heard of Angela Heap, but thank you for the recommendation. We did see a fertility nutritionist in the run up to starting IVF to get my eggs and DH's sperm in the healthiest place possible - it's her advice that DH is following now.

The tests I'm going for are some I haven't had before such as factor V Leiden, MTFHR gene, lupus anticoagulant. They also test chromosomes as well - there's a list of about 15 tests they run.

Logically I know we're in a good position as we have 9 blastocysts left in the freezer. At the moment I'm just finding it difficult to think of myself as lucky!

Aw... ladies, very sweet of you all. Thanks so much for the love and positivity.. Love you all.

Sorry to cut through the messages, have a query and I sincerely believe you could offer some help. I'm a bit confused about my gestational age, as a result struggling to know when to wean off Pred.

Based on my LMP: I'm 10 weeks today
Based on scan: I'm 11 weeks today

I'm not sure which date to go by to wean off Pred.. Any thoughts / suggestions would be greatly appreciated. Just to let you know, I will try to check the portal as often as possible but vomiting is killing me. So please do excuse me for delayed responses and msgs.

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

XOXOXO
HappyApple

@HappyApple05 I would say as long as you are sure of your dates I would stick to LMP as better to err on the safe side. Or maybe somewhere halfway between the 2?
Glad you are out of the loo for 5 minutes 😂
@ginandtonicformeplease I think it probably is the same as DNA fragmentation but they claim they are the best. 🤔

Actually I have a question too if I may. I am taking my humira injection tonight, it's a pen, the instructions seem pretty straight forward but the pharmacy were adamant I should have had some training from the clinic. Has anyone used an injection pen? Is it as straight forward as it seems? Any tips?

@chickjen I bet you could find something on YouTube - there was one for the SuperO trigger shot which was far better than the attempt that was made by Shehata’s receptionist.

@HappyApple05 haven’t the clinic advised on this based on your scans?

@ginandtonicformeplease I am on Hydroxycloriquine (the anti malaria med) as well as Pred as my first pregnancy on the Shehata programme failed. I know a number of ladies who have had their rainbow babies with this combination or just the Hydroxy on it’s own.

I managed to get a scan today due to my mental state. We seemed to see everything in the right place with a heartbeat although they were a bit vague on measurements. I have to go back in a week. Feeling a bit more peaceful although I know there’s a lot to get through.

@DaniMERL that is wonderful news. Whatever the future might hold right now you are on track with a heartbeat ❤️ Enjoy the moment 😀

Good point about YouTube, I forgot about that, thanks! 😀

@HappyApple05, I don't really know the answer but who prescribed it for you? Mr S? They should be able to tell you (sorry if that's a stupid point).

@Sunshineblonde1. You are just so wise. I got quite choked up reading that...

@ginandtonicformeplease I'm so sorry to hear you're feeling so glum today. Be kind to yourself. The weight gain is a big pile of wank. I did 5:2 when I stopped taking the bastard steroids and it worked really well for me in the month before TTC again (as I wouldn't really want to be doing it when pregnant). 9 frozen embryos sounds really positive. (I'm about to have IVF and my fear is that they don't get anything at all from my decrepit old ovaries .) Keep your chin up. As @chickjen says, you have us now and we are always here for you.

Love and baby dust to all x

Hey @HappyApple05 I may be able to help you here as I had the same issue. The Pred speeds up babies growth and development. I was measuring 6 days ahead and I went off of LMP rather than scan measurements. So I actually weaned off when I measured 13 weeks but was 12 weeks LMP hope that helps. X

Thanks a lot you sweet ladies. I shall follow @Sunshineblonde1. RMC nurse (under Dr.S) suggested I wean off at 13 weeks. But the Obs consultant suggested 12 weeks. So I was quite confused. I was worried taking it beyond 12 weeks might harm the baby.. So this was playing up in my head for a while now..

Thanks again you sweeties...

Xxx
HappyApple05

@KittyKatSmile that's good your friend has found her way to the Facebook group as well - yes we've probably seen posts from each other! Can understand what you mean about the anonymity. Keeping everything crossed for you for your treatment, hope it doesn't get too delayed and you don't have to cancel the holiday as that sounds like a great idea.
@Chickjen we are so lucky to have you lovely ladies.

Today was 10dpo so I tested using a frer. I was really trying to prepare myself for it to be negative and deliberately didn't pack the pred and Cyclogest in my overnight bag for a work trip in advance, but it was positive, was in absolute shock. Had to get OH to verify the two lines, still feel I must have imagined it. Really hoping this is our 3rd time lucky after 2mcs and Ashermans but trying not to get too ahead of myself.

Lots of love to everyone xxx

@chilliandlime amazing news!

@Chilliandlime awesome news hun... Take care.. All is well... Stay positive😊

Omg @kittykatsmile so this wasn’t IVF was it, this is with your OH? Amazing news I’m so happy for you 😽😽😽 xx

Oh no I read it wrong! It's @chilliandlime with the BFP! I got totally confused! Huge congrats hun! xx

@chilliandlime awesome news! 😄 And must be such a good sign the ashermans is not holding you back. Now for the pred to do its job and ..bingo! 🍀

Congratulations @Chilliandlime and@DaniMERL.

I've been following from afar and glad to see lots of positive news.

I am excited to get back trying mid May, with my new treatment plan. I am however becoming increasingly nervous about taking the pred and the side effects/risks. I am sure you have all been through this? Little state of self date and do I really need it?

X