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.

@LRL12 I would love them please and I'm happy to give you some money for them can you private message me and I'll sort out sending you something for them.

@LaurenAB94 fab there all yours ☺️

I hope the new year passes peacefully for everyone. I know how hard this time of year is for us all, but especially now after the year we’ve all had and the state of the world. I’m going to have a few drinks tonight - my last for the foreseeable, and probably a bit of a cry thinking about what should have been.

Here’s hoping for lots of positive news and rainbow babies in 2021. X

Hi everyone, just a little update from me. I had a scan this morning and there was a fast heartbeat with everything measuring as it should. We have never got this far before (7+4) and have never measured as expected before either. Hoping it continues this way...

Happy new year to you all. I hope next year brings better things for us all x

@Daffodil21 that’s great news, so happy for you and what a lovely way to enter the new year.

I’ve got my first scan with Dr S in about an hour and feeling very nervous. Really hoping for some positive news to end 2020.

@Tinpo sending you and everyone else so much love. This journey is so, so hard. Here’s hoping for lots of positive news for us all in 2021.

@Daffodil21 what a lovely update. Delighted for you x

@NICK7nick7 thinking of you, I hope it's good news x

Happy New Year everyone! I hope 2021 is good to all of us, I think we all deserve some good news :):) I will definitely be having some bubbles...good riddance to 2020...what a year it has been 😆😊

@Daffodil21 congratulations that's fantastic news really pleased for you one hurdle overcome

@NICK7nick7 thinking of you and hope your both doing okay xx

Had my scan. We saw one sac and baby but no heart beat yet. Dr S said he isn’t worried as sac and baby look normal, he thinks I have just ovulated later than I thought. Having another scan next week to check for heartbeat so fingers crossed!

@Daffodil21 congrats!! Really hoping it continues so well

@NICK7nick7 that’s good news! At that stage of development just a matter of a couple/few days makes such a difference so really hoping you get the heartbeat next week. Let us know how it goes! xx

@Jellystar23 wow! 4 hrs each way? That is really tough, I feel for you and am also so impressed

@rainwillmaketheflowersgrow thanks for letting me know! I decided to go for it

@NICK7nick7 thanks for the info. I’m currently at the clinic having my first intralipid. Eeeeek

Xx

Great news @daffodil21 can you remind me what meds you are on?
That's promising @NICK7nick7, good luck for next week! Xx

Thank you all!

@Whyisthistakingsolong I'm on cyclogest and pred. I'm not actually under the care of Dr S - I had joined this thread because I was about to book myself an app but then I got my bfp.

I have a question about pred actually - I know you will all be on your tailored plans so I'm not going to ask specifics, but the consultant that prescribed it to me said to reduce dosage at 10 weeks, again at 11 and then completely stop at 12. Does anyone understand why it's ok to stop completely at week 12? If we make it that far I'm terrified of coming off them!!

@NICK7nick7 hope all goes well for you!

@Daffodil21 I’m on Dr S’ complex plan and was on 25mg (five tablets) a day but after the 12 week viability scan, was able to start reducing the dose (by one tablet every five days). That meant I stopped completely this week (I’m 16 weeks tomorrow).

The plans says that after 10 weeks the risk of miscarriage drops dramatically so perhaps that’s why your consultant reduces the dose from that point rather than from 12 weeks, and perhaps why it takes two weeks not four weeks to reduce to nothing (unless you’re on a lower dose of course in which case it would be quicker to wean off)? X

Ladies does anyone know if it’s ok to drink after an intralipid? I’d love a glass of NYE bubbles. Thank you Xx

@Rebecca9876 thank you so much for your helpful reply. I will speak to the consultant again nearer the time if we get there to see what he says, but I just wanted to see what you ladies thought as to be honest I don't have too much faith in the healthcare system (I'm with the NHS atm). While I'm sure they are fabulous for some things and obviously overstretched with priorities in different places be a atm, my experience hasn't been brilliant. They admitted today that they messed up the genetic testing of my last pregnancy and didn't do it when they should have done due to not being aware it was a recurrent loss.

I'm on 20mg and would happily stay on it as long as possible as I really do think it's the reason we've got to this point today. Could he nothing to do with it of course, I haven't even had any tests

@Marabouchoc I can’t see any harm, it’s only a fatty emulsion with no drug content so you enjoy that glass of bubbles

@NICK7nick7 glad your scan went well 🤞🏻 For next week

@Daffodil21 lovely news ❤️ Another milestone ticked off for you too!! Regarding pred, I think I remember reading before that it has something to do with the placenta taking over although it’s all witchcraft and wizardry as there are no set doses or regimes so I think they tend to go with their experience with certain drugs.

Hi @Daffodil21 I just wanted to reply to your question as I got pregnant after taking prednisolone and had to wean myself off starting around 12 weeks and fully off them by 16 weeks. I think I read that it is all to do with the placenta and that it is fully formed at that point

Good luck with your journey ladies. I had lots of early losses and struggled for 3 years but the steroids worked perfectly for me

Thanks @Jellystar23 I really enjoyed my glass of fizz

I was wondering, has anyone done superovulation and know if you have to have a scan before you start taking the letrozole?

Thank you

Xx

Hi @Marabouchoc - are you seeing Dr S? If so, no. You take it at the start of the cycle and then he scans you around day 10 to see how your follicles have responded. Based on that he will tell you when to use the ovidrel trigger x

Fab thank you @Rebecca9876! I am with Mr S :) xx

Hi Ladies,

I’m new here and have a question I’m hoping some of you might have a perspective on.

My background:

I have one DS (2yrs) but sadly suffered a miscarriage in April (10 weeks) and then again in August (11 weeks). Following the second miscarriage I was convinced that something was going on beyond ‘just one of those things’ and started looking for private support. We began seeing Mr S in October and fell pregnant again in December. Unfortunately I have just found out that that pregnancy has failed (6 weeks), so we’re getting the embryo tested to decide whether to continue with the current plan I’m on or ramp it up to include steroids.

My question though isn’t actually about Mr S but about the NHS. As I’ve now had 3 miscarriages in a row I guess I’d now be eligible for NHS support, but I’m not sure if there’s any value in going down this road when I am intending to continue with Mr S too. I’m assuming that all the tests etc the NHS would carry out would be the same as those I’ve already paid for privately? Do you think there’s any additional value to getting in the NHS RPL system e.g. different opinions, different methods etc?

Sorry for the essay and thanks in advance for any thoughts!

@EKR2020 hi I went down the NHS RMC before seeing Dr S and the only tests they offered was sticky blood test which they said they would have to repeat in 3months because I'd just had a miscarriage and the results could be wrong so if I wanted any help I would have to wait 3months for the test without TTC and then a while for another consultation so about 6-8months is what they said. They did do a scan to check for any abnormalities which they didn't find any.
So basically they didn't do much and told me they wouldn't do anything until I was next pregnant and then they would do scans every 2
Weeks I asked about progesterone but they wouldn't give it me until I had a positive test. The consultant at the clinic was horrible in terms of the language she used and had no sympathy.

I then went to Dr S and felt so much better , he listened and gave me a plan, but most of all helped me stop blaming myself. He did his own ultrasound and found I have PCOS which the NHS missed , I also sent him my bloods id has previously and he said a positive ANA could cause placenta problems where the NHS was ignoring this issue.

In all honestly I don't know what the NHS might offer you as different clinics have different approaches , you may be able to get some if your medications from them? They may be able to offer you two weekly scans?
I am so sorry for what you have gone through.

You can always stay under Dr S and go just to find out if they will offer you anything.

Let's hope this new year is better for everyone.

Hi @EKR2020, I agree with what @LaurenAB94 has posted above

I would personally pursue the NHS route and Mr Shehata at the same time. I was able to have a hysteroscopy through the NHS and also some bloods like stick blood, PCOS hormones, thrombophylia etc. So it’s good to be in the system so that you can access these tests without charge, but I wouldn’t expect them to have the ‘silver bullet’ or find anything Mr S hasn’t. That said, the NHS will offer you genetic testing after your 3rd miscarriage (or at least they do in my area). I hope you never need that service but I think it’s good to be aware of. Hope that makes sense XX

@EKR2020 Don’t lose hope. I had one miscarriage whilst under the plan then had my daughter.
I had every test going on both the NHS and under my cover with PPP Axa . All came back normal - they didn’t test for NK cells. Dr S did say he’d be happy for me to be referred to him by the NHS but his wait list at the time was 2 years!

As the previous poster suggests I’d keep my options open and follow both routes.
Hope this helps x

@Naticle did you manage to get AXA to cover anything with Mr S? I'm so glad you had success but they're currently editing to cover him despite me having fertility and recurrent loss covered in my package