Immune / natural killer cell treatment when ttc or pregnant (aka the 15th pred thread)

Rosa, my symptoms came and went, MW said that was totally normal. Everything crossed for you!!

That's so out of our funding tea hits not even funny oh dear. I'll see what else we can do.

Fackin- I know what you mean about dreams.. They can be SO vivid! I also considered Dr Q but decided on Mr S as didn't want to waste time and be seemed to also be more thorough and open minded from what I read from others online.
I've managed to get out today which is a huge achievement .., I'm just worried the 'normal energy' means something's wrong as no preg symptoms. And cm seems more so nervous .. Find out tomorrow if nhs will scan me this week. I so hope so as worried about long train journey to see mr S if things going wrong.
Anyway .. Have a couple of Qs I really should know the answers to given how many pregnancies I've had. Hollandaise- ok or not? Hair dye- any safe to use in 1st trimester?
X

I paid £1800on my first visit Fackin, that was £250 for initial consultation, full immunology tests and factor v leiden. NHS did all my other thrombophelia tests and I took the results with me. It's a lot but i feel like I'm now getting somewhere.

Thank you all for the warm welcome. I hope you all get the babies you dream of and easy pregnancies. I may contact Dr S as well as CARE. The breakdown of costs is confusing though. Dr Quenby is £350 flat fee for consultation and initial drug treatment. Dr S seems to have costs for everything. I can't get Dr. Q's assistant to message me back though. One out of five messages has had a reply. I can't go there for a few months after MC though.

Facking - I'm 30, 3 Mcs under my belt ( at 5wks, blighted ovum discovered at 6 weeks and another mc at 4+2). Positive for PT Gene variant and high Nk cells. Currently 5+2 pregnant, shitting a brick, paranoid and on a whole host of drugs (clexane, cyclogest, prednisone, aspirin).
Don't give up yet if you've still got even a bit of fight left in you. Def consider seeing DrS, it's expensive but worth it.

Rosa - sorry you're feeling crap now with the steroids. Hulk face sounds hideous! But it'll all be worth it

Drttc, hope you're just testing early and that your bfp is just round the corner!

Welcome Fackin! So sorry to hear about how hard it's been for you. Hopefully this group will help you as much as it's helped us.

Rosa- those side effects sound sound awful :( It must be a comfort to know you're growing a baba in there though :)!! You're doing it!

I tested today and got BFN :( I'm cycle day 23... If implantation happened CD18 (when I had the spotting) then today I'd be at about 5 hcg. So probably too early to read- but I feel defeated! No symptoms now, so not very optimistic! Hate disappointment!

Oh good luck, Rosa!! I really hope this is it for you.

I'm nervous about meds for this as I'm allergic to so many drugs. I have bad anxiety too but strangely was calmer when pregnant. It seems so unfair that I do all the stuff I'm supposed too but still it goes wrong, I didn't even have caffeine. I feel mentally and physically drained right now but then can't sleep. Waking up with adrenaline rushes and the horrors.

Cruelest of all are the baby dreams. They're trapped and I'm frantically trying to rescue and comfort them. That's upsetting and leaves me awake most of the night. I swing from wanting to do anything to have a baby one minute to never wanting to try again the next. I'm very confused right now.

*everything else - meant everyone else

Sorry Fackin- I only saw this new page when I posted my last post.. Must be issue using on my mobile. Welcome too and so sorry what you're going through. I'm not far behind in age and similar background of loss. It's so so tough but you are in the right place - and if you feel you can't give up yet it's probably a good instinct something is going on that can be helped. There are lots of successes with immune therapy and everyone here hopes it's just a matter of (not too much) time before they get there too. I'm at a really stressful point after failing to conceive with treatment for 7/8 months I'm now 7/8 weeks pregnant and absolutely terrified .. I really feel this is it. Don't have it in me to go through again etc. you never really know until you're faced with a choice though. I hope you get some answers soon and lots of luck to starting a new happier chapter you clearly deserve x

Well lovely pred symptoms kicked in in full force- my face literally feels like the hulk must feel before he bursts out .. I've insatiable hunger, awful anxiety and feel depressed too. Hope- tell me this isn't constant? I don't understand how I've no energy either- thought was meant to get more with pred?!
Drttc - are you testing yet?
Hoping everything else having a good bank hol. My lovely loyal waiter, ahem DH, is back at work tomorrow but I'm still off so will need to be finding energy somehow to look after myself! X

Hi Seeking, thank you for the welcome. I also don't believe in unexplained.

The NHS are pretty much done with
me. I have bloods again on Friday to check HCG levels but thankfully it seems to be passing naturally. I feel ok, I think but I'm having a few anxiety attacks. 4 babies, a darling cat and a dad (not close as a violent alcoholic but strangely messed with my head) dying in the last few years has taken its toll.

I'm working my way through the posts but what is your story, please? I haven't reached it yet.

Hi Fackin,
So sorry you're going through this crap again. I'm new to the group too.
Have the Nhs put any plan in place or just said to keep trying? I think you're right to test though, there must be something going on. I don't believe in 'unexplained'. It's a crap excuse.
Sending big hugs

Hi all, I've just applied to be tested for high NK cells with CARE. Can I join you please? Currently losing #4 and thoroughly pissed off. We were about to stop trying but can't quite bring ourselves to without checking it out further. All NHS tests are normal but I'm just turned 44 now, tick tock.

Hi Sasha, i already have a ds and had a mc last yr. ttc 18mns for ds and now been 12mns since mc. I have high nk cells/ high cytokines and apparently unexplained infertiliy/rmc after 1st child is actually common sign of immune issues. Have you read Dr beer s book Is your body baby friendly. Explains alot and he was a pioneer in repro immunology.

Sasha - Dr S tests for NK cells using a blood test. And I'm pretty sure some women manage to have one (or more children) and the find they struggle to conceive or suffer RM and later find they have an immune issue. If you're concerned the push for test but be warned its not something the NHS test for. Good luck

Ha I was looking at pics if Kate thinking the same.. She certainly will have had every top therapist and beautician in the capital at her disposal so that must surely help.. Plus her whole pregnancy would have been much more stress free than anything we can hope for which helps too!
Hope - I'm ok today .. Barely moved yesterday (discovered Cuckoo bakery in Edinburgh does gluten free banana and salted caramel cup cakes- amazing, you have to try!)
Hoping I can at least walk for half an hour - I'm piling on the pounds I fear already. With cyclogest, while could really do without more constipation I do want to try switching .. But really worried about it not being as effective as the brown scare was dealt with when doubled the dose.. But that may be a coincidence. I will feel a little better if see reassuring scan next week, and a lot better if see one end of the week after or around 18/5 which would be after the time my longest pregnancy stopped growing. My birthday is just before that and not sure what to do.. Not told anyone but have a twin bro who will notice I fear... And would rather not bring anyone else into my nerve wracking limbo. RM is so much harder than anyone can imagine- it really affects every part of your life and I do hope there's more support for people like us in the future. I'm so grateful to have found this forum x

Think i'll make the swap tonight and see how I find it.
It's so unfair that we end up feeling so crap and nervous about being pregnant/ ttc when so many people don't really even give it a second thought. I've found that one of the hardest things to deal with. I'm jealous of all those who get pregnant easy and have not a care or worry in the world through out.
How on earth did Kate look so bloody amazing?!! There must have been a tornado of hair and make up people tending to her! And heels??! Jesus!!

P.S. How are you feeling today Rosa?

Seeking miracles I can really relate to that feeling of frustration at how much of a nervous wreck RM makes us. I am normally a pretty relaxed sort of person and thought that would carry through but I am still quite anxious. I still look for bleeding for example every time I go to the loo, which isn't even logical at 27 weeks (!) and always get worried about baby's movements even though he's usually kicking up a storm. Having said that I am much, much better than I was during the first 12 weeks as at least I can enjoy it now as well as feeling a little stressed.
I swapped between front and back with the pred.i didn't like the leakage at the front and thought it might be making me spot, but the back way made me even more constipated than I already was. Oh the joys! I never really found a good solution to be honest but was v.happy to stop it at 16 weeks. The pred made me look seriously gross too and that improved after 12 weeks, although have obviously looked better in my life unlike Duchess of Cambridge. She looks amazing but surely must besting inside to have pulled that exit off. I could barely walk after the birth of my so and I have a horrible feeling she was wearing heals. Bloody hell!

Thanks ladies,
I spent ages reading back last night so I'm a bit more up to date with where everyone is at now.
Congrats to you too Rosa and Hope.
Hopefully we'll both be a bit more confident when we get a bit further along Rosa!
Hope you must feel a bit of relief now, although I'm sure it still won't feel real
Until that baby is in your arms.
I hate how MC has made me such a nervous wreck but as you say Que Sera, sera... What ever will be, will be. We're all in expert hands!

Question...With cyclogest, does the remains of the pessary leak out if it's done up the bum?? I'm thinking of switching as feeling it leak out is really stressing me out. Sorry for the TMI!!

Hi Seeking Miracles, and congrats on pregnancy. Pred really masked my symptoms with this pregnancy. I was convinced I had miscarried at seven weeks for that reason but all was fine. No sore boobs, no sickness, just cramps! I was freaking out. It was very different to my previous pregnancy which I didn't take pred for. I have had seven miscarriages and have one son and am now 27 weeks pregnant with second one at almost 39, x

Hi seeking miracles ...welcome & congrats! As you'll see if you look back I'm anything but calm but (hopefully still) just over 2 weeks ahead. I've just felt some sickness, increased hunger and extreme tiredness over the last week or so but it fluctuates a lot .. And as everyone rightly reminds me every pregnancy is different and what's bad news for someone might not be for another. I'm training myself to sing que cera in my head over and over because all the stuff I can control is in hand .. I'm sure you're in great hands and have the best possible chance of success this time x