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

@Sophi81 sorry i forgot to say - try not to worry too much about your scan next week although i know that's impossible. I'm sure it will be fine. Sending positive vibes! xx

@Tgrf55 no I didn't even think to go back to CRP as I was being managed by the NHS after that. And plus at the time I had no idea it was because of the steroids this was happening. The NHS just kept telling me that my placenta is failing and the baby isn't getting the nutrients. I was just so confused and scared and worried. Hahahha @ can't get rid of you 😂😂.
Obviously now I know but what would they have done in that time I don't know? This time they have told me I won't be discharged so I'm hoping the plan works 🤷🏽‍♀️ but at the same time I'm not getting my hopes up until I've had my first scan. If you have gone past the 20 week mark and the growth is fine then the chances are you will be fine. Also Dr S confirmed growth issues are usually detected by 20 weeks if there are any! So you should be all good!

I am also on metformin this time round now that you mentioned it. Are u on those for pcos?

@Sophi81 actually my 20 week scan at the clinic was 3 days after the NHS one, not a week after. But Professor Akolekar is excellent so hopefully he would have spotted an issue. I just worry my bump isnt growing. I am 5 ft 6 so on the taller side. I also have a B shaped bump annoyingly so i feel like i cant really tell if its grown? No idea why my belly decided to form a B, i thought that usually happens when you are overweight and i'm not. But anyway, very minor thing in the grand scheme of things.
Yes, i have PCO (not PCOS) so i am on metformin. I'm a bit weird, my scans show that my ovaries have polycystic appearance but my bloods are always normal. I have my glucose test soon and i will have to stop the metformin a week before to make sure the results are accurate and i am so worried about that! I hate stopping medication 😫
What day is your scan next week? xx

Sorry you’ve had that news @Sezmarelda1 , it must be unsettling. When are you expecting to hear from fetal medicine?

@Tgrf55 yes professor akolekar is very good. He did my 12 week scan and he was so thorough. Do you know what you are having or are you keeping it a surprise for yourself?

What is a B shaped bump? 🤷🏽‍♀️never heard of this before 😬

Is PCO different to PCOS? Lol I feel like I'm in a biology class at the moment. So much I'm learning about that I didn't know 😂

My NHS scan is on Thursday this week and my CRP scan is next week on Wednesday 😬

@Sophi81 did Dr S explain why hydroxy would have helped with the growth issues?

Best of luck for Thursday, it’s such a nerve wracking wait for that first scan.

@Sophi81 good luck for your scans and keep us posted please!

PCO is when your ovaries have a polycystic appearance. PCOS is when you also have that but your bloods reflect the syndrome part of it (raised testosterone etc) PCO is a very mild form of PCOS i guess, so to speak.

Don't get me started on a B bump it's all my Husband hears about 😂From the side my belly goes inward a little bit at my belly button so i don't have a perfectly round bump it's a bit wonky and looks like a capital B from the side instead of a D like a normal bump. I am very self conscious of it but i know it's silly of me especially given what i have gone through to get here! I feel silly even writing this!

BTW i got myself in a spin earlier because i measured my fundal height and it's only 17cm and online says it should be at least 20 at 22 weeks. But baby is kicking away today and the movements are much stronger so assuming they are growing fine xx

@Ifitistobesaid thank you x no he just mentioned it when I went to see him this year to try for my second😂. He wasn't even shocked at my story, his response was I knew that was going to happen bcos I wasn't on the hydroxy. I was like thinking ey? How about someone tell me.

@Tgrf55😂😂 lol I never heard of B bump before lol but I now that you explained it I kinda know what u mean! I just didn't know it had a name to it lol. Ahhh so CRP told me I have PCOS so I'm on metformin for that in this pregnancy but they never put me on it in my previous one??? Don't forget the position of the baby can also make your stomach to appear smaller so maybe it's more in your back than your front hence the fundal height is less. And if baby is kicking that's even better news x

@Sophi81 I guess things can change all the time with your body - you may have developed PCOS since your last pregnancy. I personally love metformin! It really regulated my cycles. I only take 1 a day though, i couldn't tolerate any more than that. How many do you take? I was quite unwell when i tried to take 3 a day but 1 is fine for me.

The B, honestly 😣its so annoying! Hopefully it will round out lol. As long as baby is healthy that's all that matters though. Movements have been stronger today and more frequent so i will try not to obsess over fundal height. I think i have a long torso too so more room for them to move before my belly has to pop out?! xx

@Tgrf55 ahhh yes if you are tall or have long torso then baby has more room and bump will look smaller. I'm really short at 5ft1 so I was expecting to look like a big round ball as they say the shorter you are the smaller the area for baby but obviously because I had FGR my bump was quite small anyway and round lol don't remember having a B bump😂.

Crp diagnosed me with pcos when I was trying for my first but only gave me inofolic to take. This time they given me metformin but they only started giving it to me 3 months ago even though I been trying to conceive since feb! they said take 3 times which I was but I just dropped it to 2 because my dr is only prescribing me for twice a day. I haven't told crp that so will probably mention it at my next appointment. To be honest they only gave it to me as I wasn't getting pregnant just started throwing every medication there was at me as a last resort 🤷🏽‍♀️

Thank you all for your support ❤It was the routine NHS anomaly scan. The baby was measuring on the 4th centile overall, with abdominal circumference only on the 2.5th centile. I had a doppler scan to check on the blood flow to the uterus and that seemed fine and I have another doppler scan in two and a half weeks. I'm still waiting to hear back from fetal medicine so I don't know what their plan will be yet. I'm guessing probably some extra growth scans. I'm trying not to panic as I know by the nature of growth curves some babies will naturally be at the lower and upper ends of the curve and that can be normal, but given my history it's very hard to relax!

@Sezmarelda1 I am sure everything will be ok but i understand completely how anxious this would have made you feel! We are here if you need to vent your worries. My friend had similar and had checks every week in the end because they said the baby was too small. Her little one is now 4 years old and very petite but perfect! Like you say, some babies are just naturally smaller and i'm sure that's all it is. Sending positive vibes to you.

@Sophi81 Alright don't rub it in with your round bump haha! Yep i took inofolic too. No harm with metformin at all, i have only ever read good things about it so hopefully it helps you :) I hope you are right re being on the taller side. I just always assumed i would be huge but obv not!

@Sezmarelda1 you will get more regular in depth scan with the fetal medicine team. And you will be seen at least every 10 days as they don't want to see you too early otherwise they can't calculate if there's been any growth if seen too early between each visit. They check the growth on the stomach, thigh bone and head also. They check the blood flow from placenta to baby etc and put a plan in place as to where to go from there. With me they called me in every 10 days and made a plan on when I should be delivering and how etc. All I can say is that I know it's very stressful thinking about it bcos I remember how stressed I was about the whole thing and the pregnancy is classed as high risk. In the end I was in hospital everyday from 34 weeks. But after all that worry stress and risk I do want you to know that its not all doom and gloom Bcos i do have the most gorgeous baby. He is small yes but there's nothing I can do about that. But after 4 miscarriages to me he is my miracle. I have been told that bcos I have had a FGR baby It can happy again in my next pregnancy. So I'm hoping that's not the case but at least I know what to expect. I really wish u the best and hope all goes well at ur next appointment x

@Tgrf55 hahaha sorry!!! 😂
baby defo has more space to stretch in your long torso 😃. Plus u only half way yet they grow a lot more in the last couple of months I think x

Hi all!

Posting in this group after a while but its raining here in Thailand whilst i am on holiday so im bored in my hotel room!!

First off, congrats to everyone who has been successful so far in their pregnancies and for those of us still trying- wishing you all the best!

I had my results appt at CRP a few weeks ago and started my plan on hydroxychloroquine, cyclogest, omeprazole, intralipids and prednisone.

As soon as i started on hydro i had an awful stomach and was due to fly out the next day so after taking one full days dose and the morning dose for the day after i decided to stop and start again when i am back home. Anyway, Dr S said the medication had to be in my system for a minimum of 4 weeks before i could start trying. I am due to start trying early Jan 2023 but was wondering what everyone else's experience was with the medication and if anyone had luck the first month they started ttc.

For reference, my NK cell count was 301.5. I have had one second trimester loss followed by 3 CP's.

Thanks in advance.

I really appreciate you sharing your experience with me @Sophi81 , that sounds really stressful. I had some growth restriction with my son but that developed later in the pregnancy and was related to high blood pressure/pre-eclampsia. At my 20 week scan he was on the 75th centile but that dropped to 25th centile by 36 weeks so I was induced with him as it looked like the placenta was starting to fail. He was a reasonable weight at birth but he struggled with his blood sugars and temperature regulation so he spent a nightmare week in NICU, but thankfully there was no lasting damage - he's 3 now and absolutely full of life, albeit still on the skinny side. Looking at some medical notes it looks like this baby was already measuring small at my 16 week scan but nobody mentioned it then, I was just given a scan pic, told everything was ok and sent on my way. I think the next few growth scans will give us a better idea of what is happening, if it's tracking along a consistent centile on the growth chart and everything remains in proportion then I will be a little bit more reassured 🙏

Hi ladies, does anyone know why some people are put on just pred Vs hydroxychloroquine and some people on both? Especially after hearing your feedback @Sophi81 regarding Dr S not being surprised about your baby having low birth weight because you weren't on hydroxy... Makes me worried that it's not part of my treatment...Not that I want to be taking any more drugs if I don't need to! I assume it's results based but that comment has made me a bit nervous. I'll definitely ask the question in my next appointment.

Sorry to hear they made you feel sick, I'm afraid I can't answer that question as I'm just about to start myself @comingsoon786110 have a lovely holiday!

@comingsoon786110 oh no I'm sorry to hear it's raining whilst on holiday! I hope you still have some nice sunny days to enjoy whilst you are out there! I personally don't like hydroxycloriquine. I wouldn't say I had any symptoms except for hair loss and to be honest that was enough for me to come off it. I had like bald patches all over my head. I was so traumatised. Dr S was adamant the hydroxy was not the cause but then when I was put on them again a year later the same thing happened so it can't have been a coincidence 🤷🏽‍♀️. Apparently though this is rare as they said I am the only to experience this 😳. And to be fair I haven't really heard anyone on this thread say they had hair loss issues or maybe I just didn't see those posts 😬.

@Sezmarelda1 oh I'm really sorry to hear that you went through that stress! That's quite a drop I guess. My son was on the 10th percentile at 20 weeks and kinda didn't move from there. Then after he was born he's started dropping to 5 percentile I think. Luckily my son didn't end up in nicu but he did have jaundice so we had to stay in hospital for 5 days to treat that. I can't imagine how that must have been for you. Aww that's so cute he's 3 ❤️ has he caught up height wise with kids his age bcos mine is still tiny little thing. Babies younger than him are bigger than him but just got to see what happens.
Yes hopefully the baby will stay on the percentile which is usually not a concern for them then but they will defo follow it up regularly now that they have picked up on it. I really hope you the best on your next scan 🤞🏼

I have my first scan tomorrow and really scared at what they will say. I have zero pregnancy symptoms but feel tension in my head bcos I'm so worried 😩

@Maxime34 so I was put on both hydroxy and pred but bcos of my hair loss they suggested I come off it if it's causing me distress.

@Maxime34 sorry I didn't finish my last message and posted by accident 😂

So yes I was quite surprised myself when a year later I was told it was bcos of the hydroxy and was expected. So not sure why they discharged me at 16 weeks and not follow it up. But my last scan with them I was told the baby is textbook measurements so they were happy with that. This time I'm still not on hydroxy for the same reason as last time but they compensated with GCSF but I don't know if that will work or not 🤷🏽‍♀️. Will have to wait to see.

What meds did they put you on? I think it all depends on what results they get from the initial tests they do as everyone's will be different and everyone will have a different plan in place.

I hope your scan goes well today @Sophi81 🤞

A midwife called yesterday to book me a follow-up scan and she sprung it on me that they'd likely do an amniocentesis at the same time and that I'd need to stop my heparin injection the day before. Feeling a bit unhappy that they've sprung that on me before a proper discussion of the risks and benefits etc. Really not sure how much more I can take!

Good luck with your scan @Sophi81

@Sezmarelda1 I’m sorry you’ve been put in that position. Can you request a call with a consultant ahead of the follow up? Have you had NIPT?

That's not a bad idea @MyEasterEggs, I'll ask if there's someone I can speak to before the appointment. The midwife I spoke to yesterday seemed so nonchalant about the whole thing, I'm not sure if she was trying to avoid scaring me or if she's just immune to how scary this is because she deals with it all the time. I had the standard NHS screening at my dating scan which came back low risk for the three conditions they test for. There were no obvious anomalies found on my 20 week scan either which is also reassuring as quite a few of the more serious genetic conditions usually show up with physical abnormalities that would be picked up by the 20w scan. In my mind it's more likely to be my placenta given my history (5 unexplained miscarriages plus a successful pregnancy with pre-eclampsia) or the fact that I've been pregnant 4 times in very short succession which probably has depleted my body of nutrients quite a bit, especially as two of those pregnancies ended in miscarriage in the second trimester. I guess none of these causes are particularly good news though 😔It's going to feel like a long time till that next scan!

@Sophi81 I'm on hydroxy and have hair loss. I had a lot of hair to begin with, so although a lot has fallen out, it's not noticeable to others yet. I've been on it since July. I'm not sure how much longer I can do it for before it becomes obvious. I mentioned it to Dr Edge recently and she agreed it was the hydroxy but didn't suggest stopping. I'm doing letrazole rounds, so not pregnant yet.

@Sezmarelda1 sorry you've had that sprung on you. If you don't feel comfortable just doing it push for a phonecall beforehand.

I've definitely seen other people having the same side effects @Sophi81 so that's not good that they pretended it wasn't related. Great that you have an alternative this time around. I hope your scan went well today! I've been prescribed humira, pred, omeprazole, cyclogest, intralipids and the other standard vitamins, asprin etc. I'll definitely ask in my next meeting to see how they decide for or against including the Hydroxy too, perhaps my levels didn't require both drugs who knows. It seems a lot of people get put on both if they have a loss with just pred from what I've read so that would make sense.

@Sezmarelda1 sorry you've had the follow up sprung on you, I don't think people realise how hard pregnancy after loss is and can make you so anxious. I hope everything goes well and that's great they have said it all looks good from your other scans.