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

Hello Ladies,

Hope you're all doing well.
Congrats to those you have had bfp's, hope you're staying safe.

@Eeviee so sorry that you're going through heartache again. That was exactly what happened to me in my last mc. No embryo and just a sack that continued to grow. The misoprostol didn't work for me either and I had to have the D&C. Hope you are ok as can be. Virtual hugs xx

So I've missed ttc this cycle as instructed by Dr S due to covid.
I should be due on my period next well so now am decided what I do...do I start again or is it advised not to during this covid crisis?

I'm on super ovulation so need to decide in a few days as will need to take the meds during my period. Just don't know what to do? I'm staying home and so is OH as he's wfh but I don't know if I want to do the 4 hours drive to Epsom for the follicle tracking.

Those of you who haven't had bfp's or aren't pregnant what have you decided?

It's been a toy a year since my last bfp which ended on a mc in may 2019. Not had a bfp since :( just feeling rubbish about everything right now and very anxious about this virus too.

@Countrygirl220 big congrats, I’d definitely call the nurses, I believe they are still doing intralipids. And I don’t know your husbands reasons but I feel that the intralipids are petty unobtrusive part of the treatment, it’s just soybean oil, egg and glycerin and works to dampen down the immune response. Hope you get your repeat prescription soon. x
@mezgaski interesting your consultant gave you the hydroxy, do you have any diagnosed autoimmune conditions?

I’m wondering what Dr S might suggest for me next, has anyone here on the complex program had a miscarriage first try? And what did Dr S suggest for you next? I’m reluctant to try again without changing something. Thanks

@HoldingOn2Hope it’s so difficult having this virus thrown into the mix, when I spoke to the nurses they said they are advising not to try at the moment. I’m not going to try again yet, I’m too scared in the current climate, and because I’ve only just had a miscarriage I need a couple of cycle break at least. Maybe worth calling and speaking to the nurses as they are usually helpful, Thanks for your message, did you manage to have your last loss tested for chromosomal problems? Did Dr S not suggest any change to your protocol? X

@Eeviee hope you’re holding up ok. Someone with more experience will probably know more but I think if you Mc on the pred he usually adds hydroxy into the mix as well. But if you’ve had genetic testing that shows it was a chromosomal issue he may keep your plan the same. I know lots of people who have had success with the hydroxy xx

@Eeviee he prescribed it on the basis I pleaded with him to do something different for me. I have no autoimmune conditions - literally there is nothing wrong with me. I’m a picture of health - I just keep miscarrying healthy babies 🙁. He’d also had success with other patients with unexplained losses on hydroxy & of course there’s the big trial going on at the moment for using hydroxy with women with no issues picked up x

Can I ask a silly question - Is the hydroxy the drug that you need to take for a while to build up in your system and what sort of doses does he prescribe. Its kinda worrying me that it's being recommended for treatment of covid and that it'll be harder to come by if it gets approved. I'm wondering if I should ask for the prescription and to buy to have just in case.

Thanks for your messages @HarrietM87, @Countrygirl220 and @mezgaski. I am relieved I have some answers because I knew there had to be a reason for my loss at 19weeks so I'm pleased there is one.

I've actually taken my results to a rheumatologist last week (privately through our health insurance - doesn't cover reproductive issues) as my ANA was moderately high and i have a few auto immune issues, and some that run in the family. I'm going for a few more blood tests to see if I meet the criteria for Lupus. If I do get a diagnosis, they would put me on hydroxychloroquine and steroids anyway. If I'm borderline, no treatment. I just felt I should find out if there was a overall issue with my autoimmunity before I started messing around with the drugs that treat that anyway, if that makes sense?

@ultra26 I know Mr S won't prescribe any Hydroxy at the moment. I said I would be at home self isolating anyway, plus if its found to be helpful for treatment for covid-19 then what's the harm? He said he had made that decision with other experts in the field including NHS people he trusts. Mr S said if I looked hard enough in the private sector, someone would prescribe it for me but he advised not to look. To my mind, I was like 'Ooh! A challenge during lock down!' But my husband disagreed 😂.

So we wait. It'll be best part of six months between when we can start TTC again following our miscarriage in Jan. It won't be the end of the world and its really not that long in the scheme of things.

Thinking of you all. Xx

Thanks @KtAgs - that's soooo strange that he's not willing to prescribe. It this in general or only to people who he feels don't need it?

In general @ultra26. He won't prescribe pred either. In case there's an issue with COVID-19 and it puts people's general health at risk. Said he will get back in touch in June-ish time or when the antibody test is ready (as if we've had it, could prescribe it then). Xx

Well that throws a spanner in the works. Doesn't sound like we'll be back to trying under his plan normally anytime soon then. Thanks so much for the information. Wishing you all a happy Easter and all the best under these circumstances.

@Ultra26 @KtAgs that’s really annoying. Especially as it has to be taken for 6 weeks before trying. It just adds extra time on 😞
Do you think there’s anyone else who would prescribe it? Private online doctor etc..

@mezgaski was yours a private or NHS consultant that prescribed?

I get my prednisone from Cyprus actually and think I could probably get this there too. I have a fertility clinic who are very accommodating and can't see them arguing. I don't even know that I need it but would like to have it incase the well dries up due to covid.

@Eeviee - NHS recurrent miscarriage consultant. He does believe in the immunology stuff and does the NK cells test (uterine) (but is very anti Shehata’s plan of steroids after ovulation) x

Tbh @mezgazi I don't think I'll pursue it anyway. We're already pursuing something that isn't evidence based in the basic sense. But, I'm glad we have a plan going forward. I'm sad but it's safest.

@Eeviee I hope he does put you on hydroxy. There is literally no evidence for this but i believe that there could be a conversion syndrome from euploid embryos to anueploid. I know Dr Braverman has suggested this. I think the immunomodulators eg pred and hydroxy could help with that.

Take care all lovely ladies x

Thanks everyone for your messages, it's been so hard to decide what to do, but I have decided to stop the pred but continue with the cyclogest. @mezgaski I think both scare me in equal measure, I'm worried about worst case scenario with Coronavirus but also with my other half I feel like we should be a team and make decisions together. Does anyone else have the worst health anxiety ever since going through all this? To be honest though, I thought it was all over a couple of days ago as I had a bit of brown spotting but did another pregnancy test the line was darker and it's stopped now, but that's always how the beginning of the end starts with me so I'm a bit worried. The problem with testing so early is that I'm literally only 4 weeks pregnant now, most people wouldn't even know for another week!

@Eeviee and @Ultra26, my private doctor gave me the prescription in the end, even though I won't be using it. So that might be an option if you wanted to get the hydroxy? @Eeviee I hope you are recovering well and looking after yourself x

@HoldingOn2Hope and others who are thinking about trying, it's that thing I believe it's called 'sod's law' where the minute you're not focused it'll happen for you, but as I learned I think it's best to have a plan of what you're going to do if it does happen.

@HarrietM87 I hope you are holding up there am keeping everything crossed for you

@KtAgs I'm glad you've made peace with your plan (pesky husbands who don't agree and that's really interesting about the conversion syndrome I've never heard of that?

I wish you all a happy and safe Easter x

Hi all

It's so interesting to hear mr.s is now not prescribing hydroxy or pred at all now because initially they said they would support us if we decided to carry on because they appreciated what a big decision it was for but that we'd have to sign a disclaimer - I wonder if he's worried that hydroxy stocks will become a problem which is why he's reduced his patient count to a number he can manage?

Can I ask how people feel when they are on the full 400mg dose of hydroxy? I initially had some funny eye twitching at first and then I'm fairly sure it was giving me some quite concerning chest pain in the evenings and head aches until I halved the dose due to the new rules.

I'm supposed to be going down for my first follow up appointment after being on hydroxy for 3 months and 2 lots of steroids on 21st May but wondering if he'll do the app by phone - do any of you have any experience with this appointment - is it just a consultation or are there bloods to check do you know?

Hang in there @Countrygirl220 - one day at a time is all we can ever so but it is such a worrying time.

@ultra26 in a normal world the dose is 2x 200mg of hydroxy but currently he's asking ppl to half the dose if that helps for when you do get back to it.

I actually also need to get hold of some aspirin from somewhere but heard that normal pharmacies are running low on stocks of things like that - I guess I'll need to get down there and see!

Thanks you both for the information. @Countrygirl220 this is such a difficult decision and it's right for you - have no regrets. My OH is not a believer either and won't hear of pred right now either so I think I'd be in the same boat as you. One day at a time and many many woman have had success with progesterone and aspirin alone. I'm on my 2ww on nothing.

I think I'll try get some hydroxy just to have just in case I need it in the future and there's a shortage. I don't get it - if it's an immunosuppressant then why are they trialing it for COVID?

@hrtbrk2 I got my latest dose of Aspirin (albeit in Jan) from amazon. If they don't have 75mg, the 300mg tablets are the same thing if you quarter them whixh is a faff.

Hope everyone is keeping sane x

So I had a bleed last night when I went to the loo - fresh red blood. It seems to have stopped but still spotting when I wipe and I had cramps overnight. Pretty sure it’s all over for me. I was starting to hope this one would be ok. The EPU is closed today so they’ve said I can go to A&E or wait until tomorrow. I just feel so numb.

@HarrietM87 so sorry to hear that. Must be so worrying. Do you think you'll go to A&E? I always think the worst when I spot and us women do know our bodies. I really hope its a different outcome for you lovely. Xx

@HarrietM87 oh no I’m so sorry to hear this. Are you on blood thinners? Any chance it could be a haemotoma? X

Hello, I hope it's OK for me to join this thread. I've been reading this and a couple of the other TTC after miscarriage threads for a while. I'm sorry for all of your losses. This is a really horrible situation to be in.

I decided to stop lurking and sign up to Mumsnet so I could post on this thread and ask you some questions, I hope you don't mind.

I have been TTC my first baby for a year and conceived at least three, possibly four times in eight cycles of trying (a CP, an early natural miscarriage, a MMC at 8 weeks and possibly another CP last cycle).

After the second loss I saw a gynaecologist who ran the usual blood tests and didn't find any obvious problems, but she did a transvaginal ultrasound and said I had a thin lining (I was on cycle day 10 but nearly two weeks away from ovulation at that point because I didn't ovulate until day 22). She prescribed high dose vitamin E to help improve me lining, progesterone pessaries to take after ovulation and low dose aspirin to take as soon as I got a BFP. I got pregnant again six weeks later and this time I got as far as 8 weeks before being diagnosed with a missed miscarriage. If anything the pregnancy implanted too well the third time because it took two rounds of misoprostol and then eventually a vacuum aspiration to shift it. My gynaecologist thought there was a chromosomal abnormality from looking at the ultrasound but unfortunately because we tried medical management first and I passed the sac at home, we weren't able to have the remains tested. As far as I can work out, this means the pregnancy was unviable from the start and there was not necessarily anything wrong with the treatment I was already on to help improve my uterine lining.

At my follow up appointment my gynaecologist prescribed two more drugs to help my lining, pentoxifylline and prednisone. From reading this thread and others I have found on the internet, I know that prednisone is often prescribed to women diagnosed with high NK cells. I have not had an endometrial biopsy or been diagnosed with high NK cells so my gynaecologist seems to have prescribed the prednisone on the basis that sometimes it helps.

For context, I don't live in the UK and I have to talk to my gynaecologist in my second language. This isn't a massive problem for me as I am very fluent, but when it comes to things like talking about NK cells, I struggle a bit. I also feel like my gynaecologist doesn't necessarily explain things very thoroughly, and I don't know whether it's because she thinks I won't understand because of the language barrier, or whether it's more of a case of "trust me, I'm a doctor". So I quite often find myself down a Google rabbit hole trying to figure out why she has prescribed me something.

I'm currently on cycle day 7 and I am taking the vitamin E, pentoxifylline and aspirin every day. I will start the progesterone after ovulation, as usual. The only thing I haven't started taking yet is the prednisone.

Firstly I'm not sure whether I'm supposed to be taking it now or waiting until I get a BFP, and secondly I'm not sure about the dosage. On the prescription she has written 20mg three times a day. Based on what I've read here and elsewhere online, 60mg a day seems like a huge dose. I'm also a bit concerned that it is an immunosuppressant, and although I'm desperate for my next pregnancy to work out, I'm a bit worried about taking a very high dose of something that may suppress my immune system during a global pandemic, even if I am otherwise healthy and being very strict with the social distancing.

Anyway, sorry for the long essay. I was just wondering, for those of you on pred, when do you start taking it? Do you take it all the time, only after ovulation, or only when you get a BFP? And what daily dose are you on?

Thank you!

@HarrietM87 just read your post. I'm sorry, you must be so stressed.

@HarrietM87 I'm so sorry to hear this. Could you get a private scan? I don't know if they have Windows of the Womb (awful name) where you are but I know they're still open. At my last ultrasound they said once you get to 9 weeks then you have a good chance so maybe like Eevie said, it could just be a heamotoma. Sending you hugs and love xx

@peperethecat welcome to the thread, everyone is welcoming and supportive.
Many of us on here are under the care of Dr Shehata in London, he prescribed steroids for high or agressive Nk cells, the dose he prescribes is 25mg from ovulation, not from
bFP (this is important). 60mg sounds very high but Im not a doctor.
We have all been told to reduce dose to 15mg due to as it does suppress the immune system. We have also been told to put TTC on hold which feels like a challenge.
Hope this helps x