Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

A week Friday so still early days 🙂 xx

@MyEasterEggs no haven’t had any of those discussions yet, I’m still only 7 weeks so all the doctors have just said to wait and watch if it resolves. Had the scan with the IVF clinic and baby is still measuring well and has a good heartbeat so if I didn’t have this complication I would be so happy right now.

How are you doing, are you going to do any beta tests or just wait for your scan?

@Ifitistobesaid I’ll be having my second round of bloods tomorrow and HCG forms part of those so I should know by Monday latest if levels are doubling. I hate the wait going through GP but alternative was clinic which is 400 miles away so this makes most sense. Just gotta be patient! Definitely had progression on tests so that was encouraging when I wasn’t staring at them for too long and questioning them…

Glad your scan went well 🤞🏻

Hi ladies, I've been reading these threads for days now and am finally upto date. It's been a really heartbreaking read but it's also lovely to see some glimmers of hope in the success stories. Sending loads of positive vibes to all of you, I know how hard and lonely this journey can be.

Bit about me, I went to see Dr S a few weeks ago for our first consultation following three early losses this year. I'm a bit frustrated with myself as I originally contacted them after the second one but bolted at the prices I was quoted and we decided to try again thinking perhaps we had just been unlucky but the same thing happened again so we've finally decided to bite the bullet and go all in with the tests and protocol he suggests. I do feel the most positive I've felt in a while strangely knowing we're in good hands but equally very apprehensive about what the future holds. I've read a few times that he specialises in helping those who have had later losses so I hope he can help us. I'm also very nervous about any negative side effects of the drugs, it's a bit of a leap of faith isn't it. We have our follow up appointed in a few weeks so I'll keep you posted.

Hi Ladies hope everyone is doing ok and hanging on in there!

@LuckyNo14 congrats - my symptoms were so up and down on pred. It really messes with your mind but just try to have faith in Dr Edge and whatever she tells you :-) its also true that you'll likely feel like shit when you wean off, i did anyway. I now have delightful pregnancy acne! I almost miss the pred 😂 heart rate of 171 is amazing btw :-)

I do have a question to ask you all and sorry if i sound ridiculous. Ive been so paranoid throughout this entire pregnancy. When i came to work this morning the barriers to enter the building closed in on me as i was walking through. They're glass barriers that close from the side so not front on. It happened so quickly im not sure if it caught just my arm, or my arm and also the side of my belly but i am now SUPER paranoid ive caused some harm. I did calm the midwife and she said at 17 weeks the baby is so well protected so its fine. Am i over reacting?

@Tgrf55 thank you so much. My skin is already a mess, I loved my skin on super ov pred, it was always so clear but I now have horrible spots all over my face! My skin has always been so good until now 😂 I’m also already getting moon face but that’s probs because all I want to eat is carbs!!!
I wouldn’t worry too much about the barriers, if you think about it from your skin on the outside, right down to the baby there’s multiple layers of skin, subcutaneous tissue, fat & muscle, then you’ve got your uterus and amniotic sac all of this is protecting baby. Unless it was a massive hit that caused trauma or caused you to fall I think you’ll be okay. I totally understand your worries though, especially after all you’ve been through to get here.

@Maxime34 best of luck on your journey. I’m only just over 8 weeks but after so many losses I genuinely didn’t think I would ever get to this point. I was so concerned about Mr S being a money making scheme initially but over the last few months I’ve met so many woman in clinic & on threads that he’s helped when they thought there was nowhere else to turn. Keep us posted ❤️

@LuckyNo14 thank you so much. I'm really pleased I came across these threads, it's great to hear other women's experiences, it's already helped me mentally start to prepare for what's to come. I also had no idea before how well renowned Dr S is until now. I'm very lucky that I don't live far from Epsom and a friend of mine told me about him after hearing about my miscarriages. I feel so lucky when it's clear people travel far and wide to see him. I'm so pleased he's been able to help you and congratulations, how are you feeling? Do you mind saying what plan he put you on? X

@Maxime34 well I travel from Scotland every 2 weeks to the clinic 😂 yeah of course. So from my bloods my NK cells were only borderline but my cytokines were really high. So I had humira (2 injections over 2 weeks), prednisolone 25mg, fragmin, aspirin & Cyclogest, also intralipid infusions every 4 weeks. I tried super ovulation for 6 months with no success. Then my first round of IVF on his plan has worked so far.
I feel completely fine, apart from major bloating, really spotty & tired, occasional nausea but that’s quickly settled by eating 😂😂
When is your results appointment? Are you trying naturally once you have results?xx

@LuckyNo14 wow you absolute hero I can't believe you have to come that far. It seems crazy that clinics around the country can't speak to one another more to save you having to do that. It will be worth it in the end though and amazing that you're 8 weeks along now! We will see what he says but I imagine we will try naturally as we're lucky that conceiving quickly hasn't been a problem it's just they don't stick for very long each time. Although I've heard that the drugs can mess your cycles up so perhaps we will struggle to fall once we're on them who knows. My appointment is on the 31st so not too long to wait now. I hadn't heard of intralipid infusions until these threads but they sound like a common suggestion, when did you have to start those?

@Maxime34 I wont lie the travelling is brutal! It blows my mind there isn’t options for this treatment in Scotland might ask Mr S if he would like to start a franchise up here 😂I think if you get pregnant naturally then that’s the way to go for sure. So intralipids I always had just before ovulation, then would start steroids & Cyclogest a couple of days later. I have heard of people saying they struggled to get pregnant once they started the meds but I’ve also met lots of woman through the clinic that the meds didn’t impact. Unsure if this is true but I read on a thread on FB that Cyclogest apparently makes your uterus more fussy, so rejects abnormal embryos etc xx

@LuckyNo14 I’m also travelling from Scotland to London for treatment. Logistically it’s been quite tough as I’ve gone through IVF but there’s such a lack of support here for recurrent miscarriage. I really had no choice. Will you continue having intralipids every four weeks up to a certain point? I’m back at my clinic for my next dose in just over a week when I’ll be 6 weeks. Wondering if they’ll have me back at 10 and 14 weeks since I had a loss at 16 weeks.

@Maxime34 welcome and wishing you all
the best with your treatment!

@MyEasterEggs oh are you? It’s brutal isn’t it? 😂when I done super ov I used to just go down on my own but now I’m pregnant I’ve got scan anxiety so I make my husband come with me so it’s a wee bit better having a pal. Yeah so I went down 4w, 6w, 8w and due to go down again at 10w. They want to scan every 2 weeks & intralipids every 4 weeks. Think they’re very strict about scanning every 2 weeks, which I don’t mind at all because gives peace of mind. I’m so sorry for your loss, that’s heartbreaking. You’ll maybe find some comfort getting seen every 2 weeks also? They didn’t scan me at 4 weeks but I think after 6 weeks that’s what they do. They’ve also got a fetal medicine specialist who can scan you for nuchal scans. Did you do ivf down there? I done mines at the GRI in glasgow on the NHS (didn’t tell them about the immune protocol though) xx

@LuckyNo14 yes, I did IVF down there. I had a consultation with Dr Gorgy but ultimately decided to stick with my clinic for all my treatment and just tweak my plan slightly. I’ll be having bi-weekly scans at my local PAU which is a 10 min drive away so I feel lucky to have that care. And my GP is doing all my bloods. But I’ll probably stick with clinic visits every 4 weeks assuming they want to carry on with intralipids. I hope they do as I think it would offer me some peace of mind up to my 20 weeks scan. Trying to remain hopeful ☺️💛

That sounds ideal @MyEasterEggs hopefully you’ll get a plan soon re; intralipids. One day at a time ❤

How’s everyone doing? My latest bloods came back and results were encouraging so first scan booked at PAU on Friday then, assuming that goes well, back to London on Monday for second dose of intralipids. I’m concerned I won’t see much at 5+6. I’ve been scanned at bang on 6 weeks before and seen a heartbeat but conscious the scan might not tell us much at this stage!

@MyEasterEggs that’s great your blood tests have been good. Fingers crossed for the scan on Friday. I had my first scan at the EPU at 5 weeks 6 days and could see a tiny embryo with a heartbeat but it’s still very early.

I am ok, I still have some brown bleeding from this hematoma which is concerning. But scans are still going well. I had my 8 week scan yesterday and it still has a good heartbeat and is measuring on track. Next scan is in 2 weeks for my 10 week which feels like ages away.

@Ifitistobesaid sorry about the bleeding. That just be worrying. But it sounds like you’re in good hands and scans are going well. Will you have the NIPT test?

It seems like there's a spell of good luck on this thread at the moment which is wonderful, I'm so incredibly hopeful for everyone!

I started tapering off the prednisolone and halved my progesterone dose at the weekend. Feeling a little bit anxious to be reducing the meds😟Thankfully I have another scan tomorrow which will hopefully calm the nerves a little!

@MyEasterEggs glad your bloods are looking good. I had a scan at 5+6 there wasn’t much to see but we did see a heartbeat although I’m told that’s not very common.
@Ifitistobesaid sorry about the bleeding, that much be such a stress! Although glad scans are looking good. The wait between scans is horrendous. Positive thoughts to you though ❤️
@Sezmarelda1 how are you feeling with the weaning? Good luck for your scan ❤️ I’ve got such a moon face already & I’m only 9 weeks, seems so long away that I’ll wean. Thankfully, we still wear masks in work & other than work and travelling to London I’m too knackered to leave the house haha

@MyEasterEggs I probably will get the NIPT on the NHS if they offer it to me, but the embryo is PGTA tested so I’m not that worried. The NIPT tests for chromosomal abnormalities right?

@Sezmarelda1 I felt the same weaning off of pred. It was fine though :) I still take 1 cyclogest each evening even though i was supposed to stop at 16 weeks....too nervous! I have my 20 week scan soon so will maybe stop after that if it goes well. It's so nerve wracking though isn't it.

@LuckyNo14 Don't worry about the moon face i promise it does go a few weeks after stopping pred :) I was worried mine wouldnt lol.

Glad to hear people are getting positive news. Sending lots of love

Hi gals! I've messaged on this group a couple of times before. I'm trying to navigate the news that I have high NK cells after having 3 miscarriages.

Did anyone make any lifestyle changes regarding this? I read online that vitamin d and exercise increase NK cells but I've been advised by Dr S team to take vit d (didn't ask about exercise). Just wanted to see if anyone had any thoughts on this? I'm on hydroxy and then Pred once I get a positive but I haven't had a positive in months so not overly hopeful. Xx

Thanks @Tgrf55. I've been advised to stay on 1 cyclogest a day from 16 weeks until 34 weeks, so there's probably minimal risk staying on it at this stage...the guidance seems to be very mixed, I guess there just isn't enough evidence to guide best practice.

I'm feeling fine with the weaning thanks @LuckyNo14 and my scan this morning went well. I've not suffered with a moon face at all thankfully. I have in the past on much higher doses of pred and it disappears quickly when you wean off. It's just fluid retention which pred is well know for. Masks definitely have some hidden benefits!!

@Sezmarelda1 I don't think there is any risk taking cyclogest even if you don't need it so don't worry! I would prefer to take it personally, it just makes me feel better. Although i won't miss the mess when i no longer take it! Glad your scan went well :)

Hi @bunnykins123 how are you? I remember asking you some q’s about the nhs shehata referral. Im going next month for my bloods etc. it cant come quick enough for me to be honest.

have they been supportive so far? How are the meds for you any side affects?

how does it work when you fall pregnant re having scans etc will you go to them?

x