Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

Does anyone have acupuncture? I started it last year when ttc after my 3rd loss but stopped it before I saw Dr S. I went for another session today and it was great! I thoug hut it may help to balance hormones and being on AF. It really helped last last year.

@Wishing5tar it can also help stimulate ovulation so it may help you too? Xx

Thanks @ktAgs has your cycle length or af bleed changed at all with all the meds? I totally get what you mean because you never know what is happening naturally and what is as a result of all the things we're pumping into ourselves.

@wishing5star so sorry to hear that - the disappointing times never get any easier and I think abandoned cycles are up there with some of the worst as it makes you feel like you're back at square one - but could it just be one bad cycle and next month on the higher dose, because they were slower this month that they ramp up in reaction? I really hope so - best of luck to you

@HoldingOn2Hope you're totally right - I have played the detox card a couple of times over lock down and the husband (my Oh's friend) of the couple looked at him like he was some sort of whipping boy - he might as well have said "I can't believe you let her put you on a booze detox" I find people so odd in these situations - I'm not sure it should have to be such a battle... on the acupuncture front, I definitely think it's worth while.. I had it a lot previous to this treatment and I really rate it for things like blood flow (for lining thickening) relaxation, and hormone balancing - my lady was so good and when you've found someone who is good like that I think it really works wonders. I'm sure it will help you rebalance and get back to normal. I definitely think it helped get rid of period pain as well xx

@HoldingOn2Hope yikes! It all certainty adds up doesn’t it 🙈 I’ve been doing acupuncture weekly for about a year now and I LOVE it 😍 I was gutted it stopped due to covid but I just had my first session again this week. I’m not sure how much it helps fertility wise but I just love the fact it’s an hour a week for me to just relax and try and switch off.

Thanks @hrtbrk2 😘 here’s hoping for a fab response next month 🤞🏽How was your curry & drinks?

Currently sharing a bottle of wine with my bestie & putting the world to rights ❤️ The best medicine x

Hi @Wishing5tar thank you - curry night was actually fine, I took a bottle of Prosecco and at first thought 'oh no' when she said oh well if you fancy fizz I'll open some champagne - but I managed to really labour a glass and a half because the 'humidity today has given me a banging headache' and all was fine!

It's ridiculous isn't it, but needs must!

@HoldingOn2Hope how you feeling after your acu?

I've got quite into doing a yoga app at home whilst I've been off furloughed 20 mins each day - I used to think yoga looked really rubbish and easy but my god how wrong I was. Anyway a friend recommended the ap 'down dog' to me (sounds kinky... isn't) and it's fab. You can pick the level, music, timing, area of body to focus on etc its ace. So if any of you fancy giving it a go I'd recommend it - I've been doing it for hip opener exercises to help get the blood flow going for a good lining. Basically a really good way of getting moving but not in a way that they tell us not for for fertility! Anyway - stop rambling... over and out xx

Hi ladies - how is everyone doing?

I'm awaiting test day on Saturday but have been reading up on the affects of endometriosis since Dr Jan confirmed it and it makes for pretty sober reading in the fertility stakes.

Have any of you got this or know if anyone with it who has conceived and carried naturally?

I realise I have conceived a number of times naturally albeit over a loooong period so I'm hoping that's still possible but I guess if the Endo is relatively new I'm wondering if we have yet another battle to face

X

I've had a crap few days. I find stopping the steroids really grim. The psychoactive effects are awful - I feel like the world is ending and there's no hope. Now i'm 5 days off, I feel fine. It's crazy! I hate them.

My friend with endo @hrtbrk2 has had two children really easily but she was operated on fairly young and had them young. However, she has got ongoing issues that are really painful. I think it really depends. What did the clinic say about your treatment or next steps?

Katy xx

Hi ladies, would you mind if I joined this group? I'm currently going through my third miscarriage (fourth if you count a recent chemical pregnancy) in just over a year. It's been intense. I had one at 8 weeks (mmc, it stopped growing at 6 weeks), one at 6 weeks and this one at 7 weeks. Until now, I've always remained hopeful - I've had the full spectrum of recurrent miscarriage testing and was diagnosed with a couple of issues to treat. After the chemical a few months ago, we made the decision to try IVF too, thinking that in a controlled medical setting we might have more luck. I became pregnant with twins and took every medication advised by the clinic (Clexane, prednisolone, cyclogest, baby aspirin, even immune drips) but unfortunately I've lost both of them. Now, I'm struggling to see how this is ever going to work. The things we've decided to do going forward are:

*PGS test our remaining two frozen embryos

*karyotyping to check my husband and I don't have any chromosome issues

*An appointment with Dr Shehata, as I've heard good things. My only concern is that his medication regime seems identical to my clinic's and I'm wondering if it's worth it. Does he do things slightly differently in terms of dosages? Anyone with Dr S who can give me advice please?

Hi @Everhopeful35 - welcome & so sorry you find yourself here ❤️ You certainly have been through a lot ☹️

Several of the woman on this thread are with Dr S. His treatment is that the Pred is taken from ovulation and usually at 25mg although this is currently reduced to 15mg and increased to 20mg on positive test due to covid. Also a double dose of Cyclogest from ovulation too. He usually does the immune drips from 4 weeks up to 16 weeks and recommends daily vitamins to include omega3, vitamin D and baby aspirin. Lots of us are also on hydroxy everyday which he requires us the take 6-8 weeks before trying again.

What dose of Pred where you on with your clinic?

@hrtbrk2 I’m pleased curry night was a success! ☺️ I’m just plodding along and wondering whether I will have a natural ovulation later this cycle 🤞🏽 Although if I’m honest if feels nice to just have sex because we want to not because we have to - silver linings and all that 👏🏽

I don’t know much about endo sorry but I’m crossing everything for your test day on Saturday ❤️ Thanks for the recommendation for the yoga app! I’ve just downloaded it xx

@Everhopeful35 Welcome to this group of women warriors. So sorry you're going through more heartache 😔 What clinic are you currently at? It seems to be similar to Dr Shehata's mix of meds. Have you been tested for Nk cells? That's his specialism and he treats for that with prednisolane/drips etc. Most of us on here are being treated by Mr S. It's probably worth seeing him for his advice and maybe to see if he suggests anything different.
I'm so sorry you're going through this, I had my 4th mc about 5 weeks ago and it's just crap! Virtual hugs xx

@hrtbrk2 I don't really know much about endo either, apart from it was suggested I may have it about 7-8 years ago by my consultant and a laparoscopy was done which showed nothing. I was told if it is the case it can be laser treated during the procedure. As the results showed I don't have it I've never looked into it. I know a few ppl who have it and have conceived. Did Dr Jan suggest anything? He asked me at my appt with him in February if I had pcos and I said not that I know of, asked him why and he just said he was just asking. Would the follicle scan done that day have made him say that?
I'm keeping everything crossed for your test on Saturday 🤞🏽

@Wishing5tar @HoldingOn2Hope Thanks for your messages. I'm so sorry for your losses too - it's a horrible, horrible thing to go through and it's nice to have some support. I'm currently at ARGC. Because I have a blood clotting disorder (not one of the mainstream ones - it's called impairment of fibrinolysys, which means I don't break down blood clots easily) I was on 20ml Clexane twice a day. I had the NK cells Chicago test, which showed elevated levels, so also took baby aspirin, 5mg prednisolone and had two IVIG drips. The secretary at Dr Shehata's office said he does a different test to the Chicago one and alters doses and timings, so is different to ARGC. But I'm just at the point where I don't know who is right and what is best! Should also mention I had all my initial recurrent miscarriage tests with Dr Raj Rai at St Mary's hospital.

Hi @Everhopeful35 I'm so sorry to hear that what a terrible time you are having.
Much like the other ladies have said it seems Dr S could help you in some respects in the order of things BUT, all I would say as you are on such similar drugs already is be careful of costs. Dr s office is not cheap and ARGC are likely to be offering you equal levels of treatment - it sounds like the only thing you might be missing that we have with him is the hydroxy so I would be tempted to go back to your clinic and ask them about that as I'm pretty sure they do offer it? Otherwise you may be in for a couple of £k in test fees only to find out what you are doing is very similar if not the same. It could be worth suggesting upping your pred dose from 5mg to 15mg - I've never heard of it being so low for fertility before. A standard dose for it to have the immune suppressant effect is 15-20 I believe.

@HoldingOn2Hope I've no idea why he didn't just tell you why he'd asked about the PCOS? That's weird - he must have seen something but wasn't concerned about it possibly a small cyst or something but not anything he was worried would affect you

@Wishing5tar - arrr the sex for enjoyment sake, what is that again?! Good for you - I don't even know where my sex drive has gone on all these meds, I used to pride myself on a healthy libido and currently feel dead from the waist down!!! Hopefully it will return haha! In the meantime - make the most of it!! Haha

Hello everyone, I've been building up to posting on one of these threads for some time now, even visualising being in the position to do it.
I mostly wanted to say thank you...

I am currently 21 weeks pregnant after treatment with Dr Shehata, and I feel sure I wouldn't have self diagnosed and then found both him and Prof Quenby without the wonderful community of women here on Mumsnet.

This will be my first child after 4 MCs, all of which happened before 8 weeks. I got a referral to Quenby after my third but was too impatient and worried to wait so saw Shehata, who diagnosed me with high NK cells and thyroid antibodies, putting me on prednisolone (25mg) which didn't work. Next time round he put me on HCQ as well as the pred, but while on the 2 months wait while taking HCQ I finally had a telephone call with Quenby. Her theory was that early MCs are generally about inflammation and she asked me to join her trial which would be happening later in the year. Again unwilling to wait (I hope you can relate!) I looked this up and got myself a 2 week prescription of doxycycline to take as per her trial. I had been having cramps and painful periods, and that went away after these antibiotics, suggesting inflammation was a problem. I have no idea what it was that worked but we got pregnant as soon as I'd taken HCQ for 2 months and the pregnancy has been textbook ever since. We're now at 21 weeks and feeling great.

I honestly didn't think we'd ever get here, I was in such a dark place during all of the above, although just so determined to do everything I could. Thank you all so much for your knowledge sharing and support. I never felt strong enough to post myself on here until now, but I felt I owed it to you all to say thank you.

Happy to answer any questions any time. I wish you all the very best of luck, don't give up, there are solutions to everyone's obstacles, figuring out what the obstacle is is the difficult bit!

@hrtbrk2 I know right?! 😂 when people say ‘ahh the trying is the fun part...’ well Maureen after 3 bloody years of timed intercourse I wouldn’t exactly call it fun 🤦🏻‍♀️😂 haha

Hi @BathBookish thanks for sharing your story ❤️ It gives me hope! Where did you get the doxycycline from? A few ladies mentioned it before and I ordered some via the Superdrug prescription service but they started asking me lots of questions about why I needed it so I freaked out and cancelled the order 🙈 haha

@Everhopeful35 Ah interesting as I'm loving to ARGC if ivf is the next step for me. I'm waiting on genetic testing results on the fetus from my last mc and then will make a decision. It is a low dose of pred as Dr S always recommends 25mg from ovulation. Maybe if you took all the results you have to him he may not repeat them? I know ARGC have not asked for any of mine to be repeated other than Vit D, hormone ones which my GP is happy to do. The 2 clinics are very similar which I know doesn't help you make a decision. I'm still deciding btw the 2 😑 but will wait for results and see what Dr S suggests.
I definitely think you should have the chromosome test, as far as I was aware ARGC form let you move forward without them? I've had them done on nhs so you could ask your GP to refer you for them.
Xx

@BathBookish congratulations wishing you a healthy pregnancy :)
Your referral story sounds similar to mine! I did exactly the same, went to Dr S while waiting for Prof Q and then saw her when the appt came through. She offered me to be part of her trial but like you I didn't want to wait another few months. I ended up being given doxycycline by my GP as had a sinus infection in January. I spoke to Prof Q a couple of weeks ago as had a 6 month follow up with her and she said as I had already taken doxy I should consider ivf as the next stage.
I've had 1 mc on Dr S plan 5 weeks ago so that really knocked me but I'm now in a place where I think I'll wait to see what he advises and ARGC and take it from there. Xx

@hrtbrk2 Thank you for your thoughts. What is hydroxy? I've never heard of this. But willing to try anything at this point! I think that's what I'm panicking about - that ARGC and Shehata are very similar, so if ARGC can't help then can Shehata? Sorry, I'm feeling a little hopeless right now - still going through the miscarriage and I don't think the mad hormones and comedown off all the various drugs are helping. By the way, I was actually taking 10mg prednisolone. Got that wrong on my previous message. But perhaps that's not enough?

@HoldingOn2Hope I'm also waiting for genetic testing on my foetal tissue. Had to deliver it to hospital in a pot today... grim. I'm so upset that not one specialist has recommended we do karyotyping in the last year. ARGC didn't even mention it. So we're doing that, plus sperm fragmentation and PGS testing of our remaining embryos next to rule out chromosome issues. I'm just feeling a bit overwhelmed with options at the moment and what's best to do/who us best to see next.

@BathBookish What a wonderful, uplifting story! Congratulations on your pregnancy. You have no doubt inspired everyone on here.

@Everhopeful35 😞 what a tough day for you, I really do get it. I just hope you get some answers from the genetic testing. I'm hoping I do. I chased it up yday and was told results aren't ready yet.
Deciding on Clinics is another tough battle. I've been happy with Dr S until the pregnancy as I had some conflicting scans but I guess I was angry and upset too. Whereas you've not had the best experience at Argc and that's the next clinic I was considering if I have to have ivf. So far they've been great but I'm not having treatment yet only sending them my results and paperwork. I like how the nurse calls as soon as they receive and view results but that could all change when I and if I start treatment. Dr Ahuja did my consultation and basically went through a list of tests they require to be done by them or by GP before any treatment with all those you've mentioned being part of them (dna frag, karyotype etc) so it's all very conflicting which doesn't help us.
Just from my experience that when going through a mc I think I'm irrational and we look for causes, reasons and google all sorts. I was adamant I was going with ARGC and just a couple of days ago I said to DH 'shall we give Dr S and the hydroxy another go?'
Why don't you book an initial consultation with Dr S and maybe he will be able to look at what you've had done and tested already and suggest what he would do differently? Xx

@Everhopeful35 sorry my lovely - hydroxychloroquine by it's full name is actually a former anti malarial drug now used to treat things like lupus but in short is an immune modulator, as opposed to an immune suppressant. Dr s has had some good success with this alongside pred so it could be worth mentioning this to your docs - the only reason I say that is I'm pretty sure tor sandford is treated by ARGC and she was on it? (See her insta feed for more info and some of the ladies also discussed it further down this feed) ... secondly absolutely no need for apology, you are going through a horrible time and this feed is full (sadly) of people who understand that more than anyone - any questions are welcome as I've found myself, I just don't want you to go to a lot of extra expense if unnecessary because my experience is that as much as all the clinics have our best interests at heart they will also always let you pay!

@BathBookish I love that you've posted this, so uplifting and congratulations to you! Can I ask what dose of doxycycline you had and how you managed to get a prescription before quenby gave you one? Presumably you just need it once for 2 weeks and the effects remain long term?

Xx

Ladies - I am very aware after so many years that when it comes to testing, I am guilty of wanting to see something that just possibly isn't there so can you help me out on this... might there be a line on this test do you think? If you all say no at least I'll stop kidding myself (of course I could just wait until tomorrow to test again which I'll do anyway but as we all know patience doesn't come easily at times like this!!) my sister said she couldn't see anything so I've already got one no... over to you! X

Yay! I see it @hrtbrk2. Today you are pregnant. Gentle congratulations lovely. This has given me some hope - thanks for sharing 🥰❤ xx

@hrtbrk2 speaking as someone who has also spent hours trying to see something - I can definitely see a line! Have you tried holding it up with the back of the test facing the window? (If that makes sense)
Everything crossed for tomorrow being darker!! 🍀🍀🍀

@hrtbrk2 yes! I see it too :) test again tomorrow xx

Certainly a line, @hrtbrk2, and not the faintest one. Gentle congratulations and give it a day or two to get stronger.

Thank you all - but can I just ask (self preservation in full swing here) is there any chance that could just be trigger shot hanging over? I'm literally day 10 today x