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

Great thanks @KittyKatSmile - we are doing genetic testing so hopefully ill have a bit longer off the drugs!!! We officially start in 2 weeks!! very nervous but hoping we are successful like you. Wishing you all the best always

Hi girls, that's me had my appointment last week and now on the complex plan for the nk cells. Also going to try unmonitored superovulation which has worked for me before with my wee boy as proof! Dr S wont do this but was happy for my NHS consultant to prescribe the medication to save more trips up and down from Scotland. @Crystal2020 how are you getting on, have you started the pred yet? Wondering what the side effects are, he had mentioned you can put on weight but I'm more worried about this moon face?! Oh well if it works I'm sure we wont care either way! Feel a lot better now I've got the plan in place xx

Ah we are both on the complex plan then @Luckyducky2. Really glad you’re feeling better now you have a plan. I’ve found myself feeling much better this week too thank god.

I got my solid smiley on Clearblue last night so I’m going to start the pred tomorrow morning once ov has hopefully happened. Oh I’m dreading the moon face...I have a pretty full face anyway so I know it’ll be out of control haha!

Out of interest, what is unmonitored super ovulation? If we have no joy with the ‘natural’ route, we agreed with Dr S that we’d start SO in a few months. I was wondering if the meds need to be refrigerated & if it’s possible to travel while taking them? I’m here googling hols but not sure whether to book or not! Xx

@Crystal2020 I'm taking letrozole 5mg which is basically 2 pills in the morning on days 2-6. Then I use the clearblue ovulation kit to check I've ovulated. I have polycystic ovaries and sometimes dont ovulate so it's another hurdle we have to get over. The NHS up here just give you the box of pills and send you on your way but Dr S has you in for a scan mid cycle and gives you a drug called ovitrelle to release the eggs. I had that with ivf and you had to keep it refrigerated, I'm not sure if you could keep it in a cool bag for a short flight? Maybe someone else on here could advise with that?? We are the same, got wedding invites for abroad this summer and I've no idea what to do! Thinking I should probably keep my diary free but then its rubbish when you feel like you're missing out and nothing might even happen aah! Xx

Hi again

I've got my first biopsy tomorrow - am going to the implantation clinic in Coventry. Due to the way my cycle falls, I'll probably not be able to go back until June (we're away in March, then I'll hit the April and May Bank Holidays...)

I'm currently sporting an eczema flare up on my face (thanks stress). Does anyone else get eczema?

Are most people under Dr S?

@Crystal2020 Mr S insists on monitoring because he doesn’t like you to have too many/too few follicles and also wants to check on your lining. But I guess once you know what the right dose is for you it might not vary that much each month? You can keep the ovitrelle out of the fridge for 2 hours. I live about 1.5hrs from the clinic but usually take a cool bag anyway in case there are delays with travel. But if your follicles are ready they can administer the ovitrelle at the clinic, or they could just give you the prescription to collect it at a pharmacy near home. All depends on timing really!

Hi @VenusStarr I have eczema on my eyes which had all flared up for my appointment last week, it's amazing how we think we have it all under control but our bodies tell us otherwise! I'm with Dr S aswell, had looked into Coventry but with my age and time running out I thought I'd go with Dr S who seems to have a great track record? Theres certainly no hanging about anyway and straight on with the medication which is what I was wanting. Good luck with your biopsy, let us know how you get on! Xx

@HarrietM87 @LockThatFridge yes an endo may be a good idea. No point in antibodies as I know I have them.

My main thing is the NK cells and thinking I may have them, just trying to make the decision of parting with the money. Tl

Think I will be waiting a few more months then going to see him if no further x

Thanks so much @HarrietM87 and @Luckyducky2. Sounds like if we do manage to book to go away, we’d be better off doing it before we start SO because of timing the scan, the injection etc. Really good to know. Xx

Hi,

I'm wondering if anyone has has a similar experience to me and would be able to help at all?

I have had 4 losses, 3 miscarriages and a ectopic pregnancy which resulted in removal of my left tube ( my most dominant ovary).

Myself and my partner have gone private and I got diagnosed with borderline high NK activity by Dr Shehata. He has put me on a treatment plan of the following:

Pregnacare plus
2 X vitamin D tablets
Asprin (75mg ) ( every day)

I then from ovulation am on:
Prednisone
Ompreazole
And progesterone as well as the normal vitamins / asprin.

I then have been to st marys hospital where the consultant there has asked me to stop all these medications for 10 weeks and go for a HSG test on my remaining tube to which I am. After all if my tube is blocked then all this treatment would be pointless anyways.

My question is? Has anyone been under ST Mary's hospital? If so what do they suggest?

They are telling me they don't agree with Dr Shehata and I'm not sure who's plan to follow now.

It's been 6 months on this treatment and I'm not falling pregnant as easy as I used to, we have been trying for over 2 years now and I'm getting so worked up that it isn't going to happen for us.

Does anyone know what st marys protocol is and what they may suggest?

Hi All,

Think we are going to book to see Dr S, but just want to get timings right.

I know they say to not be pregnant when you go... but normally how long do they tell you to then not try after having the tests done?

I guess it is different for everyone, but just wondering what each person has been told.

We go on Holiday in April, so trying to work around that and OV etc.

Thanks

x

Hi @ceebee21, we had to wait 3 weeks from getting tests done (I think its usually 2 weeks to get results but Dr s was on holiday) and from getting the results can start trying right away. I guess it maybe depends what plan you are on though? Xx

@Ultra26 If you're going to be doing a FET rather than transfer straight after collection, it's slightly different - I had an intralipids a couple of weeks before transfer, then one during 2WW as well. I started the pred at 5mg maybe five days before transfer, then on the day of transfer upped it to 20mg.

Thanks @Luckyducky2 just had my biopsy... Not the most pleasant experience of my life but its for a good reason. Bit crampy now. I heard the admin on the phone while I was waiting and someone had their biopsy last week and the results were back already (she was calling to say she couldn't tell her the results, so I didn't hear anything personal).

My eczema is still there but not as sore today.

@ginandtonicformeplease thank you :). Think we are doing a FET if we have any healthy embryos.

Hi @VenusStarr hope you are not too sore today and that you get some answers soon! The waiting around is the killer isnt it, I feel so much better when I've got a plan and feel like I'm actually doing something constructive! You must let us know what they say xx

Hi everyone,

I've been reading and lurking in the pred thread for a week or two. I'm Katy, aged 34 and my husband the same. Will give you my brief history:

1st Pregnant in Oct 18 - lost our little girl at 19w4 in Feb 2019. Post mortem found no known cause but baby showed IUGR. Normal chromosomes.
Recommended from BFP asprin, extra folic acid, progesterone, fragmin (from hb) in all future pregnancies.

2nd pregnancy in June 2019 - missed miscarriage (after hb seen at 6w) at 10w4 - chromosomal abnormalities. Another little girl ❤
Karotyping of me and hubs. No problems. Same care plan again.

3rd pregnancy November 2019 - missed miscarriage (after hb seen at 6w) - 9w6 - awaiting karotype testing. My hunch is it will show normal chromosomes (as I know what both 'feel' like) and my gut tells me something is 'wrong' with me. It might be that we are just really unlucky but I think I'm amongst friends when I say that's also absolute BS and people should stop saying that to women. Bad luck is losing your phone - not a wanted baby from your womb ❤

I have a very understanding consultant who not only has tested all my babies without me asking. But he also recommended going to Epsom after my third loss end of Jan. He said it would take a long time on the NHS but we've been trying to have a baby since August 2018. I just didn't want to wait so we are going privately.

My first appointment is with Mr S on 16th March. I'm nervous they'll find something from the blood tests but equally scared they wont. Likewise for the comet test for hubby. I'm also slightly worried that Mr S has said in the past that unexplained late miscarriers are hard to treat! I've not seen anyone on here with a similar pattern to me for a while so worried theres a reason for that (but hey - I worry about Everything!)

I'm in awe of you all for being absolute heroes and carrying on when things have been so rough. And also sorry from the bottom of my heart that any of you find yourself here in the first place.

Good luck to those starting pred, FET and with their pregnancies. TTC and Pregnancy after loss is no joke! Sending love to all, Katy xx

What an essay! So much for my 'brief' history 😂

Hi @KtAgs So sorry you find yourself here and for everything you've been through, it's a horrible, horrible thing to suffer through. And you are so right, it is not 'bad luck'. People telling me that and to 'stay positive' drive me nuts!

I'm obviously not an expert but I 100 percent think you're doing the right thing seeing Dr S. I know it's frightening but it's also a hugely positive experience because that man has something up his sleeve to treat almost everything he finds.

And the DNA damage can also be easily fixed - it just takes a bit of dedication to healthy living which doesn't exactly thrill most blokes!

I really hope you get some answers, you deserve them. There's so much cash and research thrown at getting pregnant but it can feel like we're on our own at this end, just trying to make sense of endless studies and the many differing opinions of the experts.

Best of luck and if you need any info just shout! X

Hi @KtAgs and welcome! I’m so sorry to hear about what you’ve been through.

Totally agree with @FrannyAnny82 that you are doing the right thing by seeing Dr S. The whole operation is very slick, very thorough and you just know that you are in the hands of any expert from the outset. It’s also really nice seeing the proof that he’s successful...soooo many pregnant ladies were there for scans the day we went to get our results.

I’m a newbie and only started my meds yesterday but there are very some very wise ladies here and someone always seems to know the answer! This group has been a lifesaver for me over the past few weeks and I’m sure you’ll find it a big help too xx

Hello @KtAgs. Sorry to hear what you've been through. I agree - if you can afford it then you probably won't regret seeing Dr S privately. I just thought I'd give you my timeline as I am on his programme through the NHS to give you an idea of how it has been so far. I live in Epsom so if you're being referred from elsewhere I don't know if it will take longer.

I had my second MMC in early october. After the ERPC I asked my GP to refer me to the RMC. I then had no information for what felt like ages! After chasing the referral, I was told I wouldn't get an appointment until the new year. They then did the blood tests before Christmas and I had the results at the start of Feb.

I was diagnosed with high NK Cells and have been put on the prednisolone treatment. From what I can tell, the NHS won't give you the intralipids, but the rest of the plan seems the same as what other people have described.

Thanks so much for your replies @FrannyAnny82 @Crystal2020 @hippo20

I'm in Croydon (so not far from Epsom) and we don't have a RMC officially at the hospital so Epsom is somewhere ppl get referred to. But I'm a bit traumatised by the EPU in Croydon (in the middle of making a complaint) and so I really can't face going back there for the foreseeable (and presume I'll need to see them at some point on the NHS). At least going to Mr S privately with scans in the future, I can be reassured by a medic (had a few 'wild west' scans from private places that I found totally useless when I knew things were going wrong).

Basically, I desperately need some TLC for future pregnancies and sadly, the NHS service I have locally can't seem to do that because of their own trauma and underfunding. So to Mr S I go! Xx

@KtAgs I'm so sorry to hear your story. That sounds utterly harrowing, especially because you have lost at such late stages. People are always at pains to say to me very quickly 'of course, a loss is a loss at any time' but I don't really agree with that myself. My losses of course have been hard mentally but have been quick and largely painless and I've had less time getting my head round the fact that I've been pregnant.

You are definitely in the right place and seeing Dr S is a great move. He's brusque and expensive but he gets shit done and that's all any of us want.

All the very best with your 'journey' (listen to the BFN podcast if you haven't already) and remember that we're all here and can generally answer any questions or concerns you might have. (This thread saved me almost exactly a year ago as I was going through MC #4. I'm due a week today...)

Hi @KtAgs, I was reading your post there with tears in my eyes, I am so sorry for your losses. Its heartbreaking losing any pregnancy but I can only imagine how traumatic it would be at 19 weeks. I was also referred to my local RMC last year and waited for months to see them but they were worse than useless and would only check for clotting disorders which came back negative and sent me off suggesting I look for a donor. Dr S is so thorough with his tests (though extremely expensive) and it was so good to finally get some answers from him. I was so nervous for my appointments, travelling for 7 hours from Scotland just to see him, I started feeling a little ridiculous for travelling so far but there is no one up here who can help me and as @KittyKatSmile says theres no messing about with him! Just hoping and praying it works for us all!! Pregnancy after loss is absolutely no joke and other people just dont understand the fear we all have, it's terrifying and I feel physically sick going for scans waiting to be told what's there (last time they told me I had an empty womb which turned out to be ectopic though I've experienced missed miscarriages aswell which were just as awful). I hope you know we are all here for you so no worrying on your own now!! Sending hugs xx

Hi Ladies

I hope everyone is well. It's been a while since I've posted - I have just been plodding on with things (Pred and Cyclogest) but still no joy as of yet, Is there anyone on here who has made the personal decision to only take pred from a positive pregnancy test, rather than from ovulation? I know this is not what Mr S recommends, but at nearly a year down the line with the treatment plan, and dealing with the dreadful insomnia that Pred gives me, I am fed up taking it! (but we are sort of stuck on his plan for now!) I wondered if anyone had any experience of this?

Thanks XX