Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

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 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.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

@Eeviee I'm so so sorry for you, I hope you are ok. Sending a big hug.
It is just so brutal.

This is exactly what happened with me the one before this last one, in November, an empty sac. We opted for the D&C because nothing was happening naturally and it was my partner's 40th birthday party the next day. My period actually returned within 3 weeks but the next one was a bit longer like 34 days when normally I'm 27-28. We did however get the karyotyping test done which is where they check if you or your partner have a balanced translocation (so you appear perfectly fine but if you then try to have kids an unbalanced chromosome can be passed on). We did that so we could be sure that there wasn't a chromosomal issue with us that would make it happen every time, as I couldn't believe that 4 miscarriages was bad luck. But then, the fertility guy told me the other day that at because I'm 39 only 20% of the eggs are going to be good, so it's a case of trying to roll that dice which is why we have investigated the PGS testing. Just thought I'd mention it as I don't know whether getting the karyotyping test done would be an option for you too as it at least rules anything underlying out and it's either bad luck (nothing you can do about that particular egg) or a case of tweaking the immune plan but at least you've eliminated something in this horrible game of rolling the dice, which I personally find helpful in getting over it and moving on.

@Eeviee I am so sorry... are you going back next week? I am sending you all my love ❤️

@KittyKatSmile congratulations my dear! I am very happy for you! You have given everyone strength 😘😘😘😘😘😘

@Countrygirl220 thanks for your message.
We actually had the karyotype testing as part of our initial NHS testing and we are both ok. I'm 39 too so I know there's a chance my eggs aren't all good , I haven't looked into the PGS testing too much - am just worried to spend all that money if my body struggles to accept any pregnancy which is what it feels like but who knows...
Where are you looking at PGS?x

@eeviee ah ok, so you know there's not an underlying issue it's either eggs or immunes. We've been for an initial consultation at IVF London (based just outside Watford), they are quite new but their doctors have come from some of the top London clinics. My gyno gave me the recommendation we've only had one meeting but I thought they were nice and I need someone who's got a bedside manner. They also said they would follow whatever protocol you wanted ref. the pred etc. as we're in the situation where I believe in it, but my other half isn't convinced, but I want to be belt and braces if we're spending the money. It's an eye watering amount of cash, but if my current 'see how it goes' plan during Corona-lockdown doesn't work then I think that's what we'll be doing. They reckoned we'd be able to start end April/May.

@Countrygirl220 yes, even with immune issues there is always the risk of poor egg/sperm too. I haven't discussed with my partner, to be honest I don't even know if he'll be willing to keep trying, I think he's had enough of the exhausting cycle of TTC and then miscarrying. 😔

@Countrygirl220 we are in the exact same boat regarding IVF with PGS. We were going to start this month with a top clinic in Cyprus which was half the price of any clinic here (Drs are UK trained and its a UK accredited clinic) but had to cancel due to very strict and early lockdown measures in Cyprus. Like you I am a taking a kitchen sink approach. How early were your losses?

@Eeviee I know exactly how you feel, we were sort of there too, totally exhausted and emotionally bruised. But I just keep thinking, we haven't come this far and gone through so much to give up now. I'm sort of hoping the Corona-enforced different approach, might make things a bit more relaxed and then we can go down the PGS route. I don't know about you, but I always feel a bit more positive when I'm doing something. And I know I won't be happy unless I know I've done absolutely everything I can. As an aside, we are also thinking about getting a dog.

@Ultra26 it sounds like you have a plan which is great, I'm keeping my fingers crossed for you this next time!! I've had 5 in 12 months all very early, first was missed at 9.5wks, baby but stopped growing at 6+2, natural and very painful miscarriage, second was a chemical, third I was bleeding from the word go in an out of the EPU, saw sac and embryo at 5+2, saw very slow heartbeat at 6+2 and 2 days later was gone had a D&C, fourth an empty sac discovered at 6wks then D&C, fifth went for an early scan at what I thought was 5ish (wasn't sure of dates) and no sac, 2 days later started bleeding went back at 6ish nothing there and they worried about ectopic but it wasn't (phew), it was just a very early miscarriage. So a completely different experience each time :(

Hello all,

May I join in? I'm currently 6w4 and on Mr S's complex plan. I've weaned down to 20mg, but I'm reluctant to go down to the recommended 15mg until I am 10w or so (if I make it that far). Has anyone started weaning? I feel like I've been hit by a truck with zero energy, anxiety, brain fog and body aches. Are these symptoms related?

Sending support and sympathies to everyone having to deal with the extra virus stress on top of all this.

Hi @opalescentblue. I had a terrible time when weaning; those all sound related. It's so worth it both to be free of the bastard pred and to know it's done what it's meant to in supporting your pregnancy. (I thought I would die around the 14 week mark, but my little girl is asleep on me right now and all worth it)

@KittyKatSmile Thanks for getting back to me. It’s reassuring to hear that it’s likely related. Less reassuring is having to wean off so early... I’ve got very high/aggressive NK cells so just crossing my fingers and hoping for the best.

Enjoy your little one, I hope you’re keeping safe and well.

Hi @opalescentblue I'm 7+1 with highly active killer cells and have started weaning. Tomorrow will be my first day of 15mg and I'm pretty scared. I have been feeling all those nasty symptoms. I was terrified I had coronavirus until I looked it up on google.

Has anyone out there had a successful pregnancy on a dose lower than 20mg? I know I need to follow the instructions but I've never got this far before.

Hope you are all safe and well. Thinking of you at this crap time @Eeviee and everyone else x

@HarrietM87 I was supposed to be at the clinic on Wednesday but it's been pushed to Thursday now with someone other than Dr S. I'm sure she'll be great but I'm disappointed I won't be seeing him. Are you in on Thursday? X

@FrannyAnny82 tomorrow is my first day on 15mg as well. I’m feeling pretty terrible too but I remember feeling like this with my daughter. Do you stay on 15mg now or wean completely?

Sorry you’re not seeing Mr S next week. My appt last week got moved around too - I think there’s so much going on.

Hope everyone is doing as ok as possible at the moment.

In other news we got low risk on our harmony test yesterday so we are over the moon.

Sending love & hugs to everyone xxx

Hi everyone and glad you found the thread @opalescentblue. I hadn’t started weaning yet but will start today. I’m 7+3. Just hope it will be ok...don’t have faith at all that it will. I don’t remember any symptoms from weaning before, just overwhelming relief to be off them, but that was at 12+ weeks.

@FrannyAnny82 yes I’m in on thurs with the same person as you I’m guessing. Disappointed not to see Mr S as really wanted to talk it through with him.

@mezgaski congratulations! Did you find out the sex?

I've just taken my three tablets but so tempted to take a fourth and stick at 20mg, at least until I get to 8 weeks. I just don't know what to do!! Is anyone else sticking at 20 or am I being foolish?

@FrannyAnny82 I’m taking 20 today for the first time and will stick with that till my scan. If all is well and I’m satisfied after my chat with the dr I may wean down to 15 but not till then.

I went rogue and took an extra 5mg! Think I'll do the same as you until the scan then see.

@FrannyAnny82 For what it’s worth, today is the first day I feel ‘normal’ (five days in).

A poster on a different thread mentioned getting a blood test at the clinic to gauge NK cell count on the pred. Said she had 4x the normal range and that the steroids had stabilised the activity to 2x. She weaned from 10 weeks on a lower dose and had a full term pregnancy. This was before the virus. Might be worth asking if that’s an option?

@HarrietM87 Finally found the thread! How are you feeling? Any withdrawal symptoms?

@FrannyAnny82 for what it’s worth I think I would be doing the same. Good luck for your scan this week.

@HarrietM87 good luck for your scan this week & yes we did, we found out we are having a little boy (I was surprised as I feel exactly the same as I did with my daughter!)

@opalescentblue - just saying hello & welcome x

How’s everyone doing? I’m finding the days are going very slowly which isn’t helping my anxiety. I’m also having really vivid dreams

@opalescentblue this is only day 2 of 20mg... the nausea and exhaustion has really ramped up but I think that’s the pregnancy rather than the pred?! I haven’t actually been sick, just feel increasingly nauseous for increasingly long periods.

@mezgaski congratulations! I feel totally different from when I was pregnant with my son - had no sickness at all whereas feel shocking this time - so have wondered if it’s maybe a girl this time.

Hope everyone is doing ok.

@mezgaski Huge congrats and thank you for the warm welcome.
Seconding the crazy dreams!

@HarrietM87 It's funny how feeling crap is actually reassuring, isn't it.

Sending positive thoughts to everyone x

@mezgaski congratulations you must be over the moon, that's such great news.

I hope you guys weaning (or not) off the pred are ok and the anxiety isn't debilitating.

@Eeviee I hope you are feeling as ok as you possibly can be.

Quick question, I've been temping the last few days to try and time taking the cyclogest at ovulation I missed Saturday night as I had a really bad nights sleep and wanted your opinion, do you think this means I've ovulated and therefore should I start today, or do one more temp tomorrow. I haven't really done this before, so am a bit naive about it! Thanks.

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Hello everyone, I am the person who started the thread. I think it was back in 2011. It's so heartening to see the thread is still going. I found it immensely supportive when on treatment and luckily I was able to have my two children via Mr S.

I've been thinking a lot about all of you still going through this a little bit more recently just because of Hyroxycholorquine being in the news as it's been bandied around as having been successful in treating some patients with Coronavirus. I am not sure if it is being used for high NK cells, I was only the second person to take it, but it is meant to be an immune modulator and I was able to have my two children whilst taking it. I also had a high level of Prednisolone, regular intralipid treatments and the usual supplements of vitamin D etc and low dose aspirin.

Some of us who have been recognised as having high NK Cells (and Mr S told me mine were among the top 5% of people he ever sees in the clinic - I also have Hashimotos) have speculated what (if anything) that means in terms of getting other illnesses. Does it mean we are more able to fight things off as we have a powerful immune system? Does it mean we are more susceptible to things that activate our immune responses in a negative way? Or does it mean sod all...?

Just a speculation about what, if anything, a high level of NK cells would tell us about the rest of our health issues. I should ask Mr S really!

Anyway so glad to see there are so many of you here still supporting each other. Will continue to check in from time to time.

Free x

Tagging myself to join if you don't mind ladies - I've been looking for the most up to date thread on this and am in the 2ww of cycle one on dr.S complex protocol and anxious as it's just as corona hits and they advise halving my doses of hydroxy and pred so just keen to see how you are all doing on your own journeys x