Immune/NK issues - aka Pred Thread no. 21!

[Tee4me]

Roll call for all moony faces!! 🌝🌝🌝

Waiting for our rainbows 🌈❤️💛💚💙💜

Tee4me
Age: 34
TTC DC#2 since December 2015
x2 MCs (second was 'missed')
DS turns 5 this month 😱
Seeing Dr Shehata - diagnosed with Hypothyroidism and aggressive NK cells
Currently on cycle 2 of Pred and week 6 of Thyroxine
CD10, expecting to ovulate at the end of the week 🤞🏻🤞🏻🤞🏻

@Hopeflower - congratulations, wonderful news! x

hopeflower congrats!!!

adrya mr S's private plan is pred,
progesterone, aspirin (though I ditched that after some spotting), vitamins, and intralipids at 4, 8, 12 and 16 weeks (think not everyone has the 16 week ones). TBH I'm not convinced about the intralipids, but have been having them anyway like a sucker! They are expensive but apparently suppress your immune system in an unknown way. You should ask mr s and see what he says - would be interested to know how optional they really are in his eyes! I'm sure you'd be fine without them.

Hi Harriet, thanks for your reply. Honestly I’m really annoyed I wasn’t offered the option for Intralipids, even if I had to pay for them, I would have. I have just sent an email out to enquire. I just feel that going through NHS sometimes makes you feel like a second class citizen, where they don’t even give you all the options where you might have to pay for them! I don’t know if it’s to do with me feeling over sensitive now, but I’m a bit upset

I was under Mr S NHS clinic but as I was impatient with time frames I switched to his private clinic. You can't do both though as I found out. So you either stay with the NHS or go to his private clinic. The only difference I have noticed with the treatment is the intralipids. I am only on two, once at a positive test and then at 8 weeks xx

@Adrya, I was off pred from day 9-14 with this pg thinking I wasn’t pregnant! It’s deffo not ideal but didn’t hurt my pregnancy- hope that’s a little comfort.
The intralipids are a fatty soy/egg complex that helps dull down NK cell activity, but you’ll be on pred for that too so I wouldn’t worry too much (easier said than done, I know) it’s just a little added extra protection imo but don’t think it’s a crucial part of treatment.

@Hopeflower, brilliant news!! And it’s crazy as when you get the BFP you’re excited for all of a minute, then it turns to panic, so annoying. Hope you’re able to keep calm but it’s perfectly normal to have wobbly moments too (unfortunately)

Xx

By the way Adrya, that kinda sounds like a BFP is on the way!! Did you test this morning?

Hi ladies, thanks for your messages, you are amazing!!
I got my BFP this morning, still a little faint but a line came up very quick on both FR and the internet cheapie! Very mixed feelings to be honest, I will re-start/start the treatment today and trying to keep positive and hope for the best!
Have any of you got a faint line at 13dpo??
Thanks again xx

Have attached my FR

Congratulations..you can see the line..yay xx

Thanks Hope, I’m cautiously excited, as 3 of my 4 miscarriages were chemical, I got faint lines, they got a bit darker, than the MC started at around 5 weeks...hoping it’s going to be different this time, as I’m still a bit sceptical about this whole protocol...

@Adrya AMAZING NEWS! Check you out with your gorgeous positive!!! Can totally see the line! Stop testing though! You’ll drive yourself nuts!

I’m afraid intralipids aren’t offered by Dr S on his NHS plan... and you can’t buy them as an add-on from him privately.

I really think you’ll be fine with just the Pred and I assume the progesterone you are now taking too??

Thanks Luna, just praying it sticks this time!
I am still annoyed about the Intralipids to be honest, but I’ll just have to accept I won’t get them. I didn’t even think to go private as I live in Epsom, and didn’t have to wait very long to get an appointment. I am on Pred 25, Aspirin 75, vits, and from today progesterone and Fragmin, as I also have been diagnosed with borderline sticky blood (seriously dreading those injections!)
I am a little worried that the positive line is faint, I don’t think I can stop myself from testing again lol! I have emailed Lissa, my midwife contact, and mentioned the faint positive, I’ll see whether she recommends further testing to see if it gets darker or blood tests to confirm positive movement of pregnancy. Until I hear back, I will just try to relax and stay away from Dr Google! x

God speed lol ✊️ This is the most stressful time, I’m only a couple of weeks ahead of you so I’m still in the thick of it too 🤞😬

adrya congratulations!!! And honestly, id far rather be getting mr s on the NHS without intralipids than bankrupting myself to see him privately and being forced to have them! Like justla says, think of them as a (n expensive) bonus rather than a crucial part of the plan. You've got progesterone and pred and you will be fine!

Congratulations adrya! My bfp with my daughter was at 12dpo and very similar to yours, faint. But it turned into a healthy baby girl 9 months later.
Like the others have said, don’t worry too much about the intralipids, none of us convinced by them.
Also re the fragmin, it does get easier, although bloody tiresome. I’m so over doing them now! Lol! Expect some whopper bruises. I inject in both my legs and tummy to spread it about a bit. It’s quite stingy, some places hurt more... I kind of test the area by giving it a little stab, if it hurts I move away and try somewhere else. Just a few millimetres can make a difference. Good luck with the pregnancy, I hope it’s long and boring! X

Thank you Luna, Harriet and Seeking! Just had my first Fragmin and wasn’t half as bad as I expected, and I really hope I get to do it till the end of pregnancy, I won’t even complain about the bruises lol!
Also, I’m trying not to overthink every little symptom, but today I’ve been having more intense lower back pain and AF cramps, so it makes it hard to ignore! I have been having them for the past week but today they’ve been constant...Luna, I know you mentioned you had cramping too, just hoping this won’t be anything more than that! Oh Goodness why is this soooo hard! But all worth it I guess if rainbow baby at the end xx

If they get worse or you want reassurance call your EPU and they’ll whizz you in for an early scan 😁😁

Ahhhh I missed so much!! Hopeflower. & Adrya congratulations!! That’s awesome news!! This really is the most successful thread I’ve been part of on Mumsnet, it’s so reassuring to hear success stories for this protocol. Adrya it’s great you got access to him on NHS, we have spent several thousand so far and I’m still waiting on that illusive bfp. I dread to think what my final grand total will be! 😱 It sounds like the main difference is the intralipids, will be interested in what they email back with regarding that?! Now you know about them I can’t see them refusing to allow you to pay for them?

Hi all, is there a thing where if you don't comment for a couple of days you don't get a notification?! Lots to catch up on!

Great to see we are still picking up newbies on this thread. Welcome, all.

Congrats on your pregnancy Adrya. Sorry to hear you're having a bit of an anxious time; hope you get some reassurance soon.

Bala, how are you getting on?

Hi @Tee, sorry you didn’t get your BFP this month, fingers crossed for next one! I haven’t had a reply on it as yet, but some of the ladies said he won’t do it on NHS, even if I say I want to pay for them! And apparently you have to see him either on NHS or private, you can’t mix both! Whilst I know he’s helped so many people, at the end of it money still rules I guess...if I don’t get offered the Intralipids I’ll just have to go without and hope for the best I guess...xx

Thank you @Poppy, so happy I found this thread, it’s really helping keep me sane! I am trying to keep calm, but find it hard after 4 MC...praying the little bean sticks! xx

Adrya, that’s amazing news!!! Congrats, I know it’s a completely nerve wracking time and I’m sure you’ll be expecting everything to go wrong but there’s every chance that now you’re on the meds, it will all go swimmingly!! Jump on here if you have worries, most of us have been through spotting, cramping, back ache and all those wonderful things that can be bad signs and also perfectly normal symptoms.
I’ve never read anyone saying the intralipids made the difference between success and non success (and I’ve read a lot of this Dr Google stuff lol) but the other meds you’re taking carry so many success stories. Agree with the other girls, Mr S on NHS is an absolute blessing! You can save the money for babies college fund 💕💕

Thank you @Luna, I do know how lucky I am not to have to pay for this privately, but still slightly concerned about the lack of Intralipids, albeit I agree with you, Dr Google’s opinions are mixed! Just don’t want to feel like I’ve not given it the best shot, in case it goes wrong again...still waiting for an answer by the way, I bet I would have heard back on my questions if I had gone privately! Still cramping and back ache but not as bad as yesterday, assuming taking steroids again might help with masking symptoms, from what I hear...but tested again and the line was definitely darker, so at least that’s a positive!

All the ladies on here - I hope you’re all getting on ok with testing, scans, progress, etc.! Thank yoi for your support! xxxxx

@JustLa, sorry, the above message was meant for you! I called you Luna by mistake, apologies!
And sorry too, @Luna 🙊🙈🙉

adrya totally understand that you want to do everything you can - we've all been there. Have you looked
into whether it's possible to get intralipids elsewhere privately? If you can't, I can only say that I've done so much internet research on this and in the US and Australia it's really common to put people with recurrent mcs on the pred+progesterone programme (no intralipids) and it works fine, so don't feel like you're failing your baby if you don't manage to get them.