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

Hi @peperethecat Welcome and sorry to hear about everything you've been through. I'd say 60mg is a massive dose - we're all on about 25 normally but have cut down to 20 due to the coronavirus. Dr S advises patients to take the pred from ovulation so that your immune system is nice and calm by the time implantation happens. I do have a few friends who were prescribed it as part of their IVF without having been tested for killer cells but I would definitely go back to your doctor and query the dosage. Hope this helps x

Hi @Eeviee and @FrannyAnny82, thank you for your replies.

My gynaecologist hasn't told me to put TTC on hold, even though I am in one of the countries worst affected by coronavirus at the moment. She has referred me to another doctor who specialises in auto-immune diseases (not specifically fertility related) for a second opinion in July, and said that if we've had no luck by the autumn we'll move on to IVF. On the one hand I'm glad that she's pretty proactive and happy to keep trying different things to get me to stay pregnant, but on the other hand it's very frustrating that I still have no idea why this is happening. And if my last pregnancy failed because of a chromosomal abnormality then it may be nothing to do with my endometrium at all.

I found this study which showed some success in treating recurrent miscarriage patients with a combination of prednisone, progesterone, aspirin and high dose folate, and the dose of prednisone they used was 20mg, so I'm tempted to just start on that.

If you take it from ovulation, do you then stop and give your body a break if you don't conceive that cycle? So if I followed that routine I would basically take it at the same time I take the progesterone?

I feel a bit more comfortable with the idea of taking 20mg for two weeks per cycle and continuing it if I get pregnant than I do about taking 60mg a day for potentially months on end during a pandemic.

I know I need to contact my gynaecologist and ask her about this but in the meantime it's really useful to learn about other people's experiences. I really appreciate your replies.

@HarrietM87 I’m so sorry to read that. Window to the womb is open near me too so could be a good idea to see if they have a slot? So many people do have bleeding & it’s fine but I completely appreciate rules like that don’t ever seem to apply to people like us! Sending you lots of good luck vibes & keeping everything crossed xx

Oh another thing (sorry!) - my gynaecologist told me that when I'm taking prednisone I have to eat a low sugar diet. Have you all been told the same thing?

Thanks for the messages. The hospital refused to scan me as they’re not doing “reassurance scans” at the moment. I rang beforehand and they said they would so I’m totally gutted. They checked my cervix and it’s closed which is a good sign but I’ve had cramping as well and basically it could go either way. There’s a window to the womb slot available on weds and I’m due at the clinic on Thurs but I might see if they can fit me in tomorrow. Just feel utterly miserable and let down. A&E was totally deserted.

@HarrietM87 I'm furious for you 😡 It's hardly a nice-to-have 'reassurance scan', what about your mental health?! That's positive news about your cervix though. Hope you manage to get a scan sorted. Take it easy and try to rest if you can, we're all rooting for you ❤️ xx

@HarrietM87 that’s infuriating- why can’t they just scan you? I’m assuming CRP is closed today? Good that your cervix is closed, could just be a bleed. But I also know with our histories it’s impossible not to expect the worst. Wishing this time proves that wrong xx

@peperethecat only take the pred for 10 days from ovulation; then test. If negative stop the pred, if positive continue.
20/25mg is commonly given dose by fertility clinics. So essentially you’re only taking for 10 days each month then stopping unless you conceive.
Prednisolone has all sorts of negative side effects, one of which is it affects your blood sugar, tends to make people very hungry. Possibly why you’ve been told low sugar. You also need to watch salt as it causes sodium retention.

@HarrietM87 I'm so sorry you're going through this on a day when everything is closed. A bleed can go either way, I hope that yours I absolutely nothing and all is well. My friend has a bleed at 9 weeks and it's was nothing. But I understand how stressed you must be.
Crp should be open tomorrow so maybe they will be able to see you before Thursday. Sending you positive vibes xxx

Hi all

So am I right in thinking that if I decide to ttc this month I won't be given any pred by Dr S?
I have some at home and tbh it scares me to take it anyway but I'd be equally scared not to take it.
What are the options?
Not to ttc or ttc and no pred?

That sucks @harrietm87. I had the same response from A&E during August BH. They were not helpful. I managed to get hold of my consultant and he scanned me on the usual ultrasound machine. They can usually see something after 9 weeks through the abdomen. Anyone you could speak to on labour ward? Previous midwife perhaps?

Otherwise I think getting someone to see you tomorrow is a good shout. Waiting it out is horrid though. Sorry love. X

I tried everything at the hospital, cried and begged. Told them that I’m on immune suppressing steroids that I don’t want to take for a second longer than I have to if the baby has died. They were just computer says no. Tbh I wouldn’t be so upset if the person I spoke to on the phone hadn’t said they would definitely do a scan - I wouldn’t have bothered going in and putting myself at risk of covid otherwise. I’ve emailed the clinic so hope they see the message first thing.

@HarrietM87 that sounds really traumatic, I'm so sorry. I hope you get some answers soon.

@HarrietM87 oh gosh, I'm so sorry to hear this, but like the others said there's definitely a chance it's a hematoma. My sister had exactly this at about your point and they literally advised putting her feet up for a couple of days. It then cleared up and was gone by the 12 week scan. Is there another EPU nearby, that you could try instead if you can't wait til tomorrow? I know my closest one is a bit like yours and not very sympathetic so I've always said I'll go to the next closest if I need to next time. I'm really rooting for you and sending a big virtual hug x

@peperethecat welcome, I'm really sorry to hear about your losses it's so devastating. I echo the others though, 60mg feels really high, when I saw Dr S it was 25mg in the morning for 10 days until you do a pregnancy test.

@HoldingOn2Hope I totally hear you, rock and hard place, you can only do what you think is right.

Hope everyone else is ok x

I obviously hope it could be a haematoma or something innocent but I’ve had fairly constant cramping (mild, like a period) since the bleed which must be bad. No new bleeding at least. From extensive googling the best I can say is it’s 50:50 but obviously I fear the worst. Not knowing is horrible.

@HarrietM87 how are you doing? Hope toi mange to get a scan today. Positive vibes coming your way xx

Yes @HarrietM87 hope you are ok this morning and you've managed to get a scan today? Sending you lots of good luck vibes x

Yes, sending positive thoughts @HarrietM87 xx

Thanks so much. I’ve managed to find a private scan for 7.30 this evening. I’ve taken the day off work so going to hide in bed until then and hope the time passes quickly. Just want to be put out of my misery now.

Yes - thinking of you @harrietm87. Really hope a service has come through for you because you really deserve good care ❤.

@HoldingOn2Hope I think your treatment plan would really be dependent on your circumstances. So might be worth checking with the nurses? My advice was specific to me and the fact I hadn't started a plan yet. X

@HarrietM87 I'm so sorry to see this - I really have everything crossed for your scan this evening. What a rollercoaster of emotions you will be going through and of course today is going to drag, maybe some mindfulness meditation or mindless tv will help to keep the nerves at bay (but of course we all know this is little help) xx

Hi everyone, weirdly I stopped getting notifications until today so I haven’t checked in here for ages. Just wanted to say that I’ll be thinking of you this evening @HarrietM87. So sorry that you are having to endure this worry and this wait. It’s not fair.

@HoldingOn2Hope I would definitely give the nurses a call like @KtAgs suggests. They are very helpful and will support you if you decide to keep going if your treatment is already underway but they’re obviously not recommending it. We’ve weighed it all up and decided it’s right for us to keep going but I know that everybody’s situation is different. X

Hi ladies,

I called the clinic and spoke with a nurse who told me the same as they did a few weeks ago.
They don't recommend ttc but if we choose to they will support us.
In limbo :/
She said they hope things will be a lot clearer in a few weeks time so best to hold off this cycle. I just don't know what to do. I'm on the gonal-f injections which have cost a fortune so need to be sure before using them again.
Also is anyone's OH taking impryl tablets? My DH is but takes coq10 too and I've just read in the website that it's not advised to take both.
I was recommended it by a lady on another forum to take both.

@HarrietM87 I hope all goes well this eve, sending you positive wives and virtual hugs x

Good luck @HarrietM87, hoping all is OK xx

Thanks so much everyone - I just had the scan and can barely believe it - everything is fine! Baby still measuring ahead, waving and dancing around. She couldn’t see a reason for the bleed though there was a bit of a shadow that may have been an old clot, but it’s basically unexplained and nothing to worry about. I’m just over the moon.