Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

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@Jecca88 @v60 @Hopeandfaith1990 thanks for the tips, have ordered all except the aspirin, purely because the midwife gave me some to use from 12 weeks at my booking in apt, but told me not to use until then, I forget why though, but will be asking Dr Shehata when I go in for the test results in a couple of weeks. Am also trying really hard to stick to a low inflamation diet, isn't always easy though; have just been invited out for pizza with friends and worrying far too much that I shouldn't be eating pizza when last month Id have gobbled it up. I know it's easy to take these things too far, and hoping I can find some sort of a balance and still have a bit of a life and the occasional glass of red (please!).

Can I if everyone taking the Pred takes it with Omeprazole?

When I was prescribed it, the consultant said I must take 1 x Omeprazole first, then eat breakfast, then take the Pred because it will cause an upset stomach if not. Its such a faff doing it this way - just wondered if everyone else was told this too? xx

*ask

@Hopeandfaith1990 I have usually taken the omeprazole and prednisone at the same time, just before I have breakfast and haven’t had any issues. I know that’s not what they advise but trying to sequence it all on a busy morning before the school run was just not working for me!

Thanks!! Yes that’s exactly how I feel. I’ll try it and see how it goes. Have you ever taken the pred on an empty stomach? Is that bad? Xx

@Fletchasketch its so hard to balance. I love a pizza and a glass of red and i am sure on occasion its fine. When will you get your blood tests? and then i presume a few weeks after for the results?

@Hopeandfaith1990 i usually have the omeprazole on my bedside table and take it when i first wake up and then get ready and eat and take the pred together.

@Jecca88 so hard! I did read that red wine is the most anti-inflammatory alcoholic drink, so think I’m going to allow myself a couple of glasses a week to have a bit of a life! I actually have my tests this morning, waiting for my partner to provide his specimen as we speak (TMI, but we’re all friends here) so I can race off down to Epsom. Luckily it’s only a 20 minute drive, but wish me luck. Results in a couple of weeks with Dr Shehata.

Hope everyone is doing okay today x

@Fletchasketch definitely, if anything it is good for you :) lols - is he doing the dna frag test? or just standard semen analysis with NHS?

i am purposedly waiting a month so I can go on holiday and enjoy all the wine and food. I just am not ready for the stress of early pregnancy.

I hear you. I’m so conscious of time being in my 40s, but would likely do the same if I were a bit younger.

They’re only doing a DNA frag test as having got pregnant twice in 6 months apparently indicates no issues with motility etc. Having raced to the clinic they seemed remarkably unbothered about taking it off me quickly, also forgot the signed form so not the best start but got there in the end :).

Oh @Fletchasketch my husband had that but he had to do it in this small cubicle in the clinic. Awkward lols. His results came back as normal but good to rule it out.

@Fletchasketch absolutely! I figure we’re spending so much anyway, may as well rule everything out. Bloods now done and credit card maxed out. Now a different kind of TWW….

LOls @Fletchasketch - its almost not real the amount of money i spend there - think of it as monopoly :(

also i love this metaphor of the TWW - amazing.

Hi all, I'm 11DPO today and BFN with some brown cm so feeling pretty despondent. I know its stupid and an old wives tale but I ordered mucinex from the US (lol the extremes) so I stupidly had a bit more hope this cycle but no joy. I've enquired about doing superovulation with Dr S and asked NHS if I do so if it'll interfere with my NHS treatment.

I think we're going to take the next cycle off (first intentional - e.g. not MC - break from TTC for 2.5 years). I just feel so burnt out with all the tracking, meds etc, its really taking a toll. I stupidly got my hopes up for a Christmas baby and now feeling all the feels about any due dates now being in 2026 (although I absolutely know in the grand scheme of things this doesn't matter at all).

Sending strength and baby dust to you all. This journey is so hard :( xxx

Hi I’m just wondering does anyone have experience of going to either Dr Shehata or Professor Bronsens for NK cell testing? We have been referred to Dr Shehata’s NHS clinic who offer NK cell testing which I believe is blood testing, but I’m also looking at paying private for professor bronsens because it’s a lot cheaper and I know he tests for both low and high NK cells which I don’t know if Dr S does? I know professor bronsens tests are confined to uterine NK cell testing whereas I think Dr S tests them as a whole from the blood I believe? Im not sure which is better?

I’m not even convinced I have this problem as two out of my 4 losses were chromosome issues, one of which I had to TFMR at 16 weeks, with the other two they are unknown however I do have autoimmune thyroid disease which puts me at risk for high NK cells.

@Notsure31 Heyy ... I am under P Shehata at CRP clinic. He did blood tests on me for a wide range of things including the NK cells. I was diagnosed with high activated NK cells when pregnant (as he tests the blood in a pregnancy state) very clever. I was put on prednisolone, progesterone and intrapalid infusions. Blood tests alone costs around £3,200 xx

@Jecca88 how are you feeling on the meds hun??? are you okay??

@Hopeandfaith1990 sooo sorry to hear hun! it really isnt fair is it !! its just takes over your whole life doesnt it, i feel like you spend your whole life waiting, waiting for your period, waiting to ovulate, waiting in your two week wait! i totally sympathise! I did the ovulation induction with P Shehata and it worked the second cycle xxx

Hey, have you explored having them tested on the NHS? I got mine tested after my 4th loss on the NHS - not sure if that’s a possibility for you?

not sure re uterine vs blood but most people I know had the blood tested. I’d be interested to know if you find out! I assume if they’re high in the blood they’re high in the uterus too? Although that could be completely wrong x

@Meg310532 Thanks lovely! It’s so true, it’s just a constant cycle of waiting and disappointment and you realise how much time has gone by 😔

how are you doing? How many weeks are you now?

NHS have told me if I go down superovulation route with Dr S they’ll discharge me from recurrent MC unit 😣 which I’m guessing would mean all my meds etc would have to be privately obtained too. Gah. I feel like I’ve exhausted all NHS options with them but equally feel nervous to essentially discharge myself.

@Hopeandfaith1990 what are the MC unit doing for you hun?? I found them really unhelpful so I just counted my loses with them and went straight private. I also think I was really impatient and didnt like all the waiting around !!
Would the NHS not fund your ovulation induction??

I am 15 weeks now, I have my 16 week scan on Friday :) Xxxx

Yeah this is how I’m feeling as well to be honest!! They won’t do the ovulation induction because that comes under fertility rather than recurrent MC and I conceived within a year so I’m at the bottom of the list for them again 😭

I think I need to be brave and take the Dr S plunge! Expensive but still (hopefully 😂) less than going straight to IVF which was our initial plan.

that’s so amazing!! Are you off the pred now? So happy for you 😀

thanks hun @Hopeandfaith1990 its so bad how the NHS work with this sort of stuff isnt it!!! makes me so mad how hard it is to get the treatment we deserve under the NHS. What are the MC unit doing for you? Is there much that you are missing out on if they take you off their system???.. can you take any of your tests to CRP....?? thanks sooo much hun it still doesnt really feel real, yes took my last tablet on saturday ! its actually really nerve wracking not being on any of the meds xxx

@Hopeandfaith1990 I’ve had all the recurrent miscarriage testing through nhs apart from NK cells, I asked for a referral to Epsom and St Helier trust as they do do NK cell testing under Dr S but it’s not as comprehensive as his private clinic.
Reasons we haven’t gone private are partly due to cost but also not convinced 100% this is the problem with me due to at least two of my losses being chromosome issues, we also have a genetics referral at local hospital.

But I would consider paying private for Prof Bronsens as his fees are much cheaper (I think because it’s part of an NHS patient funded research trial).

I just generally feel like my body is failing at doing this one thing, I get pregnant easy but always lose them.

We haven’t bothered with fragmentation testing for my partner as this can mostly be corrected by lifestyle/the right supplements which we are working on but he has booked in for a scan to rule out any structural issues which could cause this.

I bet it feels so strange to be off it. It’s such an amazing milestone to hit but also very (understandably) scary id imagine. But the medication has done its job beautifully for you and your body has got this ❤️

MC unit aren’t doing much tbh - just prescribing me the pred, hydroxy and progesterone. I’ve got a follow up appointment with them in June but I don’t think I can wait that long … going to speak to my husband tonight and see if he agrees with going to superovulation. I wonder if NHS would have even known if I hadn’t been honest and told them I was considering it..?

@Hopeandfaith1990 you have been given majority of the meds that you need from NHS hun !! to be honest the only extra thing you would benefit from is the letrozole purely to get more eggs to speed things up. However the pred and the steriods all get sooo expensive with CRP and they also make you come in for regular scans and infusions and dont really give you the choice. Which is then frustrating isnt it as you are getting all the meds for free on the NHS. hmmm.... ! its such a bloody tricky one! How would the NHS know that you are doing the superovulation with CRP clinic????... do you want to do the letrozole purely to speed up the geting pregnant part? when was the last time you were pregnant? are you ovulating okay by yourself ? x

I think my NHS NK cell testing was the exact same as the others in this thread - I posted my results a few pages earlier and it seemed to be the same test as others. Basically you might save some cash if you can persuade NHS to do it for you (even if it’s just a starting point before doing Dr S or Dr B)

I completely empathise with how you’re feeling, I feel it atm as I feel I can’t even get pregnant now after my 5th loss. It’s so hard but remember it isn’t your fault.

it sounds like a genetics referral will be really helpful for you, I hope they’re able to give you some answers and help. My husband had DNA fragmentation test (it was strongly recommended to us by recurrent MC unit - it came back fine) and a semen microbiome test (on top of multiple regular SA) which did come back with something so he was prescribed a short course of antibiotics. One of the challenges with fertility is it seems the testing is endless and a lot of tthe research is new or inconclusive 😭