Immune/NK issues - aka Pred Thread no. 22!

@Pop1234 I am hooked up now! I woke up in the night absolutely convinced it was all a false alarm but the test this morning was darker than yesterday. So here I am! 😱
How are you getting on? ❤️

Welcome @mybestfriend123 MrS has a reputation for being quite blunt so be prepared for that. But it sounds like you had a bad experience at your RMC, which I did too, and I really like him and find him so much nicer and far more caring than the RMC. It feels like he actually wants to help you. 🍀

@mybestfriend123 welcome. There are quite a few people who have seen Dr S, I am one of them. First appointment he just tells you which tests he thinks you need, take your results of the tests you've had done as this may save you some money. You'll be in good hands. When is your appointment?

@Chickjen did you go for your intralipids today? How are your lines looking?

Hi ladies,

I can't explain how happy I am to find this thread!!!!

Finally feel like there is ladies here in the same situation as myself.

3 misscarriages in under a year and also a ectopic pregnancy which left me with just my right tube.

I've had all the tests on the nhs which I've been told have come back normal ( although I wouldn't be shocked to find out that, that is incorrect if I'm totally honest due to them being totally awful!

we are now going private with Dr S, has anyone been before? It is in the Epsom clinic. Also what should I expect?

What will he ask me? Is there anything I can do to prepare in the mean time?

Good luck ladies!!

@Chickjen fingers and toes crossed for you lovely xx

Thanks @Pop1234 yes appointment is booked. They couldn't do today but there was a spot free tomorrow I can make luckily. Now I just need to hold on that long! I will test again in the morning though just in case 😀

@Chickjen yay on your positive and fingers crossed this won't be another chemical. It's hard what to suggest, I was going to say wait until you were late then realised you can't go for 2 weeks if you don't go tomorrow, it's a tough one. Have you made an appointment?

@Chickjen He'd eat the bloody ice cream and not bother doing the test! The problem with living in the sticks is that at times like this it's a minimum of two hours to get to a reasonably sized city. None of those Aspen hospitals are near us but thanks for trying - that's more than DH is doing currently. Surely it's not too much to expect a bit of help from him to source this??

@ginandtonicformeplease I googled Parkside hospital and it seems to be part of a group 'Aspen Healthcare' they have a few locations, maybe one of those is closer? Or set DH a practice test with some cool bags and ice blocks and a tub of ice cream and see how long he can keep it from melting? 😀

@Chickjen To get back from the pharmacy my clinic recommended I'm two hours on public transport, about three hours from Wimbledon. I have no idea what I'm supposed to do as the online pharmacies appear to only sell to doctors registered with them, and my clinic wants all its patients just to pay the extortionate price of the pharmacy next to them.

@Chickjen @ginandtonicformeplease these are the times I'm pleased it's only me putting pressure on myself!! Bloody DPs!! Although I'd like someone to vent to (I'm sure you'd probably all like it if I had someone to vent to as well!!) One of my friends from Sydney who was over last week messaged me and asked if I would please tell another of our friends over there soon so he 'didn't feel left out'. I'm sorry, selfish as it may seem, I had thought this was about me and my feelings etc etc. I had only told him early so I could do it in person. I was very cross...

@ginandtonicformeplease I am around an hours drive from Wimbledon so they said to bring a cool bag. It does say in the leaflet that comes with it, it can stay out the fridge for 2 weeks (like if you are going away) but you must then use it, it can't go back in the fridge.
My DH was just as helpful! Just as I was about to inject he kindly reminded me 'this is a grand, don't mess it up!' No pressure then! 😀

@Chickjen No, I haven't paid yet! I'm currently trying to find out how much it would cost from the pharmacies that deliver as I've read that it needs to be chilled and I live quite a way from Wimbledon and the pharmacy my clinic recommended. So far both online pharmacies I've contacted have told me they only calculate prices when they receive the prescription I'm getting irrationally mad at DH as he's grumbling about the cost but then not doing ANYTHING to help me reduce it.

@Naticle my cycles seem to run at super speed! I have had a BFP on day 21 a few times now, the lines gradually get darker for the first couple of days, then start getting lighter, then AF only a few days late.
I think you are right though I am going to book an appointment just in case.

@KittyKatSmile awesome news! I didn't realise you could see it moving already ❤️ It's nice to have some good news to keep us all going 😀

@Chickjen thank you so much for asking. I don't always talk about good news on here, trying to be sensitive. The scan was amazing. It was moving round loads. Just blows my mind because it's only 4cm long! Just waiting for the Harmony test results now and then I'm determined to enjoy this! And 6 more days of drugs!

Take care, I'm sending positive vibes to you xx

@ginandtonicformeplease I had a panic yesterday after I posted in case you had already paid and I was making it worse! I'm in Surrey so not a million miles away but getting time off work is tricky at the moment (my boss is going away and no one else can cover). As if all this isn't stressful enough now we have to shop around for the best price! I think I read somewhere MrS is pretty adamant you have to have intras at his clinic though 🙄

@KittyKatSmile that's what I have been thinking too. I automatically assume this will be the same as the others, but what if it isn't?
How did you get on with your scan, I am assuming no news is good news?

A positive only 9 dpo is a good sign. With my chemical miscarriages I only ever got very weak lines and they only appeared the day before I was due.

I know you can't rule out a mmc but so far I think you've got the best result you could hope for.
Id go for the intralipids.
Good luck x

@Chickjen mine cost £225 I think. Personally I would go as I wouldn't like to think about the alternatives in the future if it weren't a chemical. But I realise this is a hugely personal thing. Not saying anything else until you have more clarity other than that I've got my fingers tightly crossed for you xx

And thanks for the info about Wimbledon - now I just have to work out how to get there!

@Chickjen Where are you based (roughly)? £300 seems a lot for intralipids - I found an independent place in London that will administer them if your doctor send over a prescription. Open 8-6 six days a week I think, and 'only' £200. I'm sure there must be other services like this! My clinic only offered them one afternoon and one morning a week so I had to look for alternatives.

Ladies I need advice please.🤔 I had a BFP on Monday on 9dpo and tested again yesterday and today and the line does seem to be progressing well. The thing is I feel 99% sure this is another chemical, no sore boobs, but I do have a headache (normally a bad sign) and some really slight spotting. So the question is, do I go for intras? If I don't go tomorrow I can't go for the next 2 weeks.
Am I overthinking this, do I just go? I don't really want to waste £300. I have had 5 chemicals and 3 MMC so the odds are it's chemical.

@ginandtonicformeplease I paid £950 from Parkside Hospital Wimbledon if that helps at all.
You have done so well getting this far, keep going one day at a time xx

@Hopeful07 @Chickjen Thanks for your replies, good to know you haven't had side effects. I hated the side effects from pred. The doc said that it's an anti-TNF med, so I don't know whether that's why they use it - there are so many different terms they use. He did mention that it's difficult to source, but they have a pharmacy nearby that supplies it so that's one less thing to try and track down. And yes, £1300 for two injections

I am seriously wondering whether I should just give this all up - it was bearable just having to go through IVF, but having all this extra on top of that is just getting too much. Not really the money (although obviously that is getting to be a problem) but the emotional rollercoaster that this is.

Plus my cycle still hasn't returned to normal after my last MC - I'm now on day 40 and no sign of AF!

Hi @ginandtonicformeplease sorry to hear your NK cells are going up 😟 I have taken Humira and no side effects whatsoever, it was 2 pen injections I did at home and didn't even feel the needle. I took it for TNF alpha cells rather than NK though, but it did work really well.
I did find it really difficult to track down though, no chemist stocks it or can order it in, will the clinic provide it for you? And if they haven't warned you already - it's expensive! 💰

Hi @ginandtonicformeplease, i havent got any experience with the humira injections, but just last week at my review appointment with Mr.S, he mentioned i might need it if the tnf-a results came back high.
Did u do a test for tnf-alpha? or u hav jus been asked to take humira instead of intralipids? I know many ladies in the other forum take this for their raised tnf-a..and heard that humira is very expensive. i m hoping my results come back as normal!!

And for ladies taking hydroxychloroquine, has anyone had any side effects like ringing in the ears or eye twitching. I have both for quite sometime now and so worried. When i spoke to the midwife, she s jus asking to stop taking the medication and then come and see Mr.S, he seems to be on holiday till September..I dont want to stop hCQ after taking it for 8 months now..want to try with it once..

I hope everyone else s doing good..

So I've just had the results of my NK cells retest after having had 2 lots of intralipids - the activity level has actually gone up, not down. It was a different doctor I spoke to this time, and rather than throwing out choices he actually recommended a treatment path. Apparently 10% of women don't react to intralipids and I happen to be among them. Next treatment is humira injections, then retest levels again to see if that's worked. Slightly worried that he didn't mention a back up option if humira doesn't work - does that mean that's it?

Has anyone got any experience of humira? Against DH's explicit instructions I googled it and the side effects sound pretty potent, but I can't tell if that's if you've been on it for years rather than just two injections.