Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

Same with me @Tinpo, @luckyducky2 @rebecca9876. My son, now 3, was conceived on the first go and no problems at all. Since then I've had 3 early MCs, but I know the last one was due to trisomy 16.
There has to be a link tho hasn't there?!

I'm on hydroxy and had 2x injections of humira. I really think I need the pred too but not on it for the moment. I'm currently v early pregnant again and convinced the worst is going to happen again.

Oh @Tinpo my heart goes out to you :( 20 weeks is stillbirth isn’t it? I am still far more traumatised by my latest loss than all the others; I can’t imagine what you’ve been through. You are in good hands now though. I had to google what CHI is - you may have already seen it of course but in case not have you come across the chisupport.org website? It looks like it has a lot of good information and ideas for support (plus a list of experts in the UK) x

@Whyisthistakingsolong even from our small sample group look at how many of us there are, it feels like there must be something in it!

It’s so hard not to expect the worst so I just hope this time goes quickly for you and that everything is ok. I found having mini milestones helped me. When is your first/next scan? x

@tinpo, sorry to hear about a 20 week loss, that's devastating.
@rebecca9876 I have my first scan on 21st Jan. I've gone back to work today so at least that's some kind of (rubbish) distraction!

Thank you all. It’s has been so traumatic- especially with this latest pregnancy as I heard the heartbeat at 18 weeks so thought we were safe (my first 20 week loss measured much smaller). But then at my 20 week scan, on my own due to Covid, I found out he had died. After being told by my hospital there was nothing wrong with me and my losses had just been ‘bad luck’ it was just awful.

@Rebecca9876 in some countries a 20 week loss is considered stillbirth, but in the U.K. it’s not until 24 weeks. Thank you for the website link - will definitely have a look!

@Luckyducky2 it’s chronic histiocytic intervillositis - a placenta disorder. He can’t be 100% certain if I do have it, as the first two placentas weren’t checked for it, but the most recent one was and it was pretty much 50/50 whether I do or not, so he said it’s best to presume I do and over-treat me. But I suppose next week once I get results back of things like NK activity that might decide how I’m treated.

@Whyisthistakingsolong sending you positive thoughts for your pregnancy. I really hope this is the one for you x

@Tinpo “on my own due to Covid” - that almost made me cry. I spent many appointments alone last year but to get that news at 20 weeks by yourself, oh I just want to give you a big hug :( I’m not sure where you’re based but my hospital (Kingston in London) has bucked the trend and never stopped partners being there throughout the pandemic. For that reason it’s very oversubscribed with pregnant women now ;) Maybe you can see if there are other hospitals near you that have a similar policy and move to one of them for your next pregnancy if so? x

Thank you @Rebecca9876 it really was so traumatic. Then having to wait an hour for my partner to get there while he sorted someone to look after our little boy, it was just horrendous. I’ll never forget the one lovely sonographer who gave me a big hug even though she wasn’t allowed ❤️ I’ll never get over it but learning to live with it, like all of us in this horrible baby loss club.

I’m not near London but I’m waiting to be referred to Tommy’s in Manchester, so I’m hoping I could be part of their rainbow clinic for my next pregnancy alongside Shehata’s treatment. I’ve had bad experiences with both my local maternity units so I’m running out of hospitals 😂

I’m a bit worried about these new restrictions - will the clinic still be open? I know we’re allowed go out for medical appointments but is this classed as essential, and enough of a reason to travel across the country?

Argh I hate the whole uncertainty of the world at the moment.

@Tinpo uck I am also worrying about this.

Personally I think given its medical it's ok to travel but i am also guessing the clinic will be more flexible if people wanted to do calls online... I am concerned we wont be able to get over for intralipids if I need them 😔

I am 5 weeks pregnant,naturally after a failed ivf transfer abroad. Lucky as we can’t go abroad now for ivf but I was diagnosed with high NkCells with coventry. I was advised against taking pred due to covid and I have a dd in primary school but with announcements today and school closed today I am thinking about taking pred as we have had 5 miscarriages in 18 months prior to ivf. But I’m worried about getting covid. We were advised 20mg until 10 weeks and then reduce each week. We stay home, we get online shops. It would in effect only be for 4 weeks really as I couldn’t get any until after a consultation on Thursday for the meds. Any thoughts? Just worries about it all...

Ps I think ivf clinics will remain open here. I think it’s classed as medical treatment!?

I’m due to have a biopsy in Coventry this month. Is it Naive to think they may stay open 🥲x

@Tinpo @LookingforAnswers86 I’m also really worried about this! Our results appointment is in a couple of weeks - we were going to travel over from Ireland for it but I think I’m going to ask for a virtual appointment now.

I don’t know what sort of treatment I’ll need yet but I have found some providers in Ireland that will administer intralipids and IVIG for you at home. Mr S would need to send them the prescription though. I wonder if he might allow this given the current situation?

@Tinpo the new guidance doesn’t refer to essential it says you need a “reasonable” excuse and one of those is “Medical reasons - You can leave home for a medical reason, including to get a COVID-19 test, for medical appointments and emergencies.”

My reading as a lawyer is attending the CRP clinic is totally fine. It is for a medical appointment, there’s no reference to locality of that appointment and it’s one you can’t get elsewhere/ you are already registered with and being treated by the CRP clinic. So I would say don’t worry as I can’t see how a policeman pulling you over would have a leg to stand on legally. I can’t hand on heart say how a court would determine but that’s my reading - plus if they still tried to fine you, you could totally sell your story and make thousands anyway ;) (am joking)

I would say it’s totally fine and don’t worry x

@NessyT91 yup there is one place I know that does them in Dublin but I had a terrible experience with them last time....she spent an hour trying to get a vein and didn't succeed so I couldn't get the intralipid that day.. I swore I wouldn't use them ever again and would fly over 🤣🙈 i got a prescription from a place in Ireland for them before...I did ask Dr S about doing them in ireland (if like for some reason we couldn't go over) he mentioned that I would have to sign some legal document or something I wasnt entirely sure but he definitely preferred doing them in his clinic....let me know if he comes back to you with something else :)

@LookingforAnswers86 ouch that sounds painful! I will mention it to him and let you know what he says. Hopefully things will calm down soon and travel becomes a bit easier. We are based in the West so it’s a real pain to get to the UK at the moment - Knock airport is basically closed so it’s a three hour drive over to Dublin Airport to get anywhere 😩

@NessyT91 oh god that is a trip and a half 😔.

Great, thanks a mill :) The other thing that put me off a little was that it took them 3 plus days to find a nurse/ arrange it but maybe that was a complete once off because they were very nice to deal with. I think I just like how everyone is in the same boat with Dr S and you know you will hear back ASAP....anyway getting them here is a good backup 👌 ( once you have a prescription)

@Tinpo that is absolutely heartbreaking, I'm so sorry you had to go through all that alone I hadn't heard of CHI, its terrifying how many things can go wrong, but you are so strong to keep pushing on. Let's hope we all get our rainbows ♥️

@Whyisthistakingsolong gentle congratulations to you, i know this bit is the scariest but we are all here for you and sending positive vibes your way!!

@LookingforAnswers86 I didnt know you could sign a legal document for the intralipids, I asked Dr S if I could do intralipids up in Scotland to save the journey up and down (but would obviously still come down for the scans etc) and he said absolutely not and that he wouldn't treat me! Apparently he had been sued by someone that had got intralipids elsewhere and things had gone wrong for her? Maybe I should ask again now we are in national lockdown? Xx

@Luckyducky2 honestly it didnt seem like he was offering me much of an alternative - he told me the same thing re being sued. I suppose when I phrased it like what if there were no flights over (like what happened a few weeks ago) he was trying to come up with some kind of a solution but his answer was so vague it didn't make much sense ( I dont even know if a legal document exists to be honest) and I asked on 2 occasions, so he clearly doesn't want people to get them elsewhere. I am guessing if you are in the UK you can always get there somehow, although I am sure it doesn't feel easy or nice to make a big journey at the mo...😬😕 I'd actually prefer to fly over and get them in the clinic, although I know it's not recommended at the mo...anyway it's crazy times

@LookingforAnswers86 ah no bother, sounds like it would probably be a no from him then! I'll just drive down to the clinic and keep it simple. Its not too bad this time as I'm doing a frozen embryo transfer but it was a real headache trying to arrange a trip down in a fresh cycle of ivf with scans etc every day! Xx

@Luckyducky2 I think it's his way or the highway 😂😂 but we all need him!when is your next transfer? I hope it goes well x

@LookingforAnswers86 I got that impression from him too haha! Need to keep him on side, he's our only hope lol 🙈🤣 I am at the mercy of whenever my next cycle chooses to arrive, so hopefully sometime in the next few weeks I can get the transfer booked in and intralipids sorted. I hate this bit, waiting, waiting....just want to get on with it!!! Xxx

@Tinpo I thought it fair I follow up on my last message as I noticed the BBC are today talking about “essential” medical needs. I don’t know where they are getting that from as it’s not what the law actually says - I looked at the government guidance and the new regulations which come into force today, and all the previous sets of regulations which amend the original ones...

Anyway I would say please don’t worry. The guidance is clear that medical appointments are a reasonable reason to leave home and to travel out of your local area (and are a different reason from leaving home for other “essential” reasons). I don’t see how, if a policeman stopped you, he could have the authority to decide that ongoing fertility treatment is not essential and anyway it doesn’t need to be under the law, despite what the BBC are writing..

Sorry if boring but hope it helps rest your mind a little! Xx

Hope everyone is doing OK given the recent new about lockdown.

Just thought I would update as I had my repeat NHS scan today. We saw the baby and they had a heartbeat! Such a relief to see the heartbeat finally. I’ve got my 8 week (although think I’ll be more 7-7.5 weeks as I think I ovulated late) on Monday and then if all OK still I will have my next lot of intralipids then.