Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

@HopefulH thanks so much for your message. It's traumatising isn't it. I am still waiting for the grief to hit from this last one, but I'm worried I am numbing to it.
Do you mind me asking where you went for your tests and treatment for the Endometrisis? Once I've had my surgical procedure I suspect I'll need to have it treated again and whilst Prof Quenby is good I want to throw everything at the next attempts xx

I'm sorry you've not been successful yet either, you're right though these forums keep you going and give you hope that one day it will happen xx

@Tgrf55 @Sezmarelda1 thank you. So my scan was ok I guess. They didn't see much to be honest as the dr kept referring to it as "very small pregnancy" but what I'm thinking he was trying to say was that's it very early bcos all we could see was the yolk sac. So I don't know yet as we have not seen a heartbeat yet. He ruled out ectopic which is good I guess. I have my first scan on Wednesday with crp and I'm really nervous. I really hope they give me some good news 😬

@Sezmarelda1 yes pred is defo linked to lower birth rate as my son was born at 36 weeks weighing only 3lb 10 and I was only on pred and Cyclogest at the time up to 14 weeks with dr S. The steroid for lung development was given to me at 34 weeks by the hospital which is in injection form (which stings real bad) because with all the growth restrictions he had and complications in my pregnancy, they thought he was going to come at 34 weeks so wanted to prepare him. I really do believe that because of the steroid injection luckily my son did not end up in nicu..

Is Dr S protocol always a minimum of 14 weeks for pred? What kind of dose are you all on? I’m due to start reducing my dose of 20mg next week, by 5mg every few days, and will be off it completely by week 13. My recent care has been under Dr Gorgy though so slightly different approach I think.

Also, are any of you on intralipids? I’ve just had my third dose at 10 weeks and may have more at 14 and 18 weeks. But Dr Gorgy wants to retest my immunes at 12 weeks. Has anyone had further immune testing during pregnancy?

@MyEasterEggs I’ve been on 25mg of pred with Dr S. From reading here most people seem to be on that dose too. At 12 weeks I started to wean off by reducing it by 5mg every 5 days, so should be off it completely by 15 weeks. Also on intralipids every 4 weeks, with the last dose at 16 weeks. I haven’t had any further immune testing in this pregnancy so I don’t think that’s something he does.

@Sophi81 Is it your 6 week scan at CRP tomorrow?

@Ifitistobesaid thanks for sharing. Since I had a late miscarriage at 16 weeks (baby measured 14 weeks but it’s hard to know if he died at 14 weeks or was on the small side since he had been measuring behind) I’m keen to continue treatment up to that 14-16 week period. I could taper off the pred a bit more slowly taking me to 14 weeks. I also taper off cyclogest by then and have my next dose of intralipids. Maybe it’s enough to be on aspirin and clexane beyond that point then have the final dose of intralipids at 18 weeks?

I think I’ve mentioned before that I have reservations about coming off pred so soon but that’s two specialists (I got a second opinion) suggesting almost the same thing. And I don’t understand the repeat testing since your NK cells levels do naturally increase in pregnancy, don’t they?

@MyEasterEggs totally understand your concerns. Did you tell Gorgy you were anxious about coming off pred at that point? Dr S continues cyclogest until 16 weeks. Re: the repeat testing (or lack of) I don’t really know the reasoning behind it.

@Ifitistobesaid does he have you tapering the cyclogest from 16 weeks? Or do you taper sooner and finish then? I’ve got enough to taper from 15 weeks. What about estradiol? Sorry…all these questions!

@MyEasterEggs no tapering for the cyclogest, just need to stop taking it at 16
weeks. Same with hydroxy. My IVF clinic had me on estradiol until 12 weeks and then told me to come off it, no tapering needed for
that either. I also stopped fragmin at 12 weeks but am back on aspirin to help prevent pre-clampsia.

Thank you for sharing this @Sophi81 , 3lb 10oz is tiny! But it gives me so much hope that we might have a reason for measuring small 🙏I see fetal medicine on Friday so I hope to have more answers then, and will ask their opinion on the possibility of steroids being the cause.

How far along were you at the time of the scan @Sophi81 ? I've been in a similar position of only seeing a yolk sac, but by the next scan there was a heart beat. I know it's an anxious wait from one scan to the next, do what you need to to keep yourself sane. Good luck for the scan tomorrow and I have everything crossed that you get to see a little heart beat flickering away!

I shared your reservations completely @MyEasterEggs , I've had two losses at 14 weeks and the thought of changing anything at all around that time in my current pregnancy scared the crap out of me. I'm still on pred and cyclogest at 22 weeks but under Prof Quenby who seems to do things differently. Did you ask your specialist about the possibility of delaying the taper slightly? If it would help you to feel less worried and has minimal risks to the baby it seems like a reasonable thing to do x

Thanks so much for your help @Ifitistobesaid that’s taken a weight off and I’ll tweak a few things for my own peace of mind 💛

@FfayeN I didn’t realise you could have inflammation of the womb. I assume that is something they can only pick up via biopsy? It’s good that you don’t have to worry about that anymore. I haven’t seen any specialist outside my clinic yet apart from my endocrinologist and gynae. I’m hoping I can get away with a one off trip to London to do some blood tests & then see Dr G via phone/zoom.

@VenusStarr I have heard of people having ‘silent’ endo but I imagine that is much more rare. I read somewhere the other day that it may be linked to immune issues so you may be right in that immune drugs may help suppress it. I’ve been told the only treatment other than removal via a lap is birth control which is not very helpful!

@Sezmarelda1 I’m glad you are feeling less anxious fingers crossed that it is all it is🤞

@HopefulH No I went private as I couldn’t face waiting and have found all the delays this year mentally hard to deal with (been doing ivf since jan and still not got to transfer). We are lucky enough to have financial help from my family. My dad was trying to throw money at us after the miscarriage! It gave him a way he could help. We have about £5k left which needs to cover further immune testing and transfers. Luckily my OH is working quite a lot of overtime so hopefully we can make up any extra we need. I’ve also been finding this journey hard and often have low periods not helped atm by having SAD and hating winter. I do also find this board uplifting though and it does make me feel less alone. Sometimes I have to take a break as it feels like everyone is getting their BFP other than me but I am genuinely glad for people on this board who have success.

@InvisibleDreamer yes they detect through biopsy. Though I took the antibiotics it may not have cleared 100%. It can be common in post c-section births apparently and is basically bacteria or inflammation, so wonder if my previous surgical management caused it. When I have the next one I will ask about antibiotics just incase but I'm not hopeful they'll prescribe any. I have left a message with CRP and my doctor supported the request for referral to his NHS clinic so progress has been made today in some sense 🤞🏼.
I'm so sorry you've not gotten your BFP yet but it seems as though you are on the right track! Will Dr G set a plan over the phone? If so that's great and will save those all important pennies xx

@Sezmarelda1 if I could taper from 14 weeks I think I’d feel okay. I could ask again but the care from my primary clinic has been shocking and Dr Gorgy, while helpful, may charge me hundreds for a chat 😅

What I may do is chat with my NHS consultant who I’m seeing from 14 weeks. Just for added reassurance. But you’ve all helped me see that my needs can safely be met which is the main thing.

Good luck for Friday 💛

@MyEasterEggs i asked the same question re why you no longer need pred after 1st trimester. I believe its because once the placenta has taken over, the baby is protected from the NK cells. I know that if you take pred for too long in pregnancy it can cause problems but im unsure when the cut off is. I understand the anxiety of stopping medication. Ive only just had the courage to stop cyclogest and im 23 weeks. I was supposed to stop at 16. I finally decided to stop at 19 weeks and had some spotting so i immediately took it again but the clinic insisted i should stop again so i did last week.

@Sophi81 i hope your scan at CRP goes well! How far along were you when you had the NHS scan? My first scan was 5 weeks 6 days and there was a sac but no heartbeat yet. Next scan was fine. Xx

@Ifitistobesaid yes my scan is at crp tomorrow I am sooo scared and nervous.

@MyEasterEggs I had a loss at 14 weeks so dr S kept me on pred until 14 weeks then weaned me off 5mg each week after that. I think I was on Cyclogest until 6 months.

@Sezmarelda1 yes good idea. good luck on Friday! I Will be thinking of you x

@Sezmarelda1 as for my scan he didn't really say how far I am he just kept referring to it as small pregnancy. But in my head I'm thinking 5 weeks 😬. So tomorrow scan with crp should be 6 weeks ish so I hope I do see something. Thank you, that gives me some hope knowing u been in the same situation and had a positive outcome In the end. I'm not even joking but just getting to 6 weeks feels like I been waiting for eternity!!!! Does anyone else feel like time just slows right down? 🤷🏽‍♀️

@Tgrf55 I have the same fears when stopping medications, gives me anxiety 😬. I think I was 5 weeks but not sure as he didn't tell me. Wow, it's amazing how 1 week makes a difference in the scan. I really hope that is the case with me. I already look like I'm 3 months pregnant. I couldn't even zip up my coat and was worried people at work will notice and with it being a delicate situation don't really want to discuss it with work colleagues!! It's like I've just blown up overnight. I take it this must be the meds causing this 🤷🏽‍♀️

@Tgrf55 how long were you on pred for? And how did you wean? I might stay on the cyclogest for a little longer too if that’s safe.

@Sophi81 I think that’s the approach I’d like to take, though the more I think about it the more I’m wondering if weaning from 16 weeks would be safer for me. I could reduce dose every 5 days and be off by 18 weeks. Ugh! It’s so tricky. Sometimes I feel like I’ve been given a general protocol rather than something that’s supporting me…

@MyEasterEggs i started weaning off by 5mg every 5 days at 12 weeks. I was pleased tbh because my moon face was getting bigger by the day! I felt quite unwell weaning off but I think that’s normal. It’s fine to take cyclogest, no issues in taking it for an extended time. I just kept being told it’s like taking antibiotics that you don’t need after 16 weeks. Finally cyclogest free now! Praying everything stays ok.

@Tgrf55 I can't remember how far along you are now, when is your next scan? Wishing you all the best!

Those with Dr S is he happy for your prescription to be gotten elsewhere, I would already be on cyclogest for example through my RMC, just thinking where I can possibly save money so I get a few months go at this 😔. Have you had every scan they've suggested too? I'm sure there was someone here that delayed some due to funds and having them at their epu but unsure if they're still here xx

@FfayeN thank you! I am 23 weeks, next scan is NHS at 28 weeks. It's not needed but my consultant is lovely and booked me in for it because he knows i am anxious. CRP don't mind if you get prescriptions elsewhere - i have cyclogest, thyroxine and metformin on prescription from my GP to save money. Ye si went to all scans at CRP xx

@Hayley220 hi, I was just reading your earlier posts on here, I think I am in a similar boat to you. I just don't have the funds for Dr S's plan longer than a couple of months.
Does anyone else know other clinics that offer the NK a cell testing? I'm close to London and spent all day yesterday trawling the internet and just couldn't find any outside of IVF clinics (this may be a route I need to go down if this next MC turns out to be a chromosome issue aswell). Thank you 😘

@Tgrf55 that's great thank you! Wonderful news and not too long to wait either ☺️. Xxx

@FfayeN I’m not with Dr S but haven’t had any scans with my clinics. All my scans have been with EPU. I’ve been lucky with mine as they’re flexible and have the capacity to support me. But some services are really stretched.