Immune/NK cells pred thread #32

[VenusStarr]

Hi everyone. The last thread is filling up. Have tried to tag everyone who posted on the last few pages, but feel free to join / tag anyone I missed.

@Gizmo1983
@fleur89
@Sunflower360
@MotherOfShihTzus
@lozzmax
@HopefulH
@kea1990
@Sprinkleofbabydust
@Newbeginnings22023
@star2022
@RumandSpinach
@Ems123456789
@MamaW05

Love to all ❤️

@lozzmax just seeing that the other night took me by surprise. I've been doing the pessaries at the front and don't know if there's been some irritation, so going to try the back and see if that makes any difference. I've done another test this morning and seemed to be two good red lines. When I spoke to my clinic they were saying that they don't really want to have this, that didn't help with me already feeling anxious.

@lozzmax I’m on what feels like the kitchen sink - pred, clexane, aspirin, tacrolimus, progesterone (oral and pessaries) and intralipids. Compared to nothing in previous pregnancies, aside from antiemetics. So very different, you’re right, and yes I’ve heard that about the pred before being used for HG although I haven’t been on it for that, maybe it’s masking nausea When did you start coming off the steroids? Did you find they gave you any more energy? I’m falling asleep every 5 seconds.

@v60 I am on the same meds as you minus the tacro. Never been an any meds before, my boobs defo don’t feel as sore as they have before my skin is flawless which it’s never been and don’t have any nausea yet just a funny tummy tbh I’m the opposite of constipated. Oh and I’m so tired walking anywhere feels like I’m dragging a bus behind me I’m hoping it is the steroids suppressing the boobs and nausea. Only other thing is my cervix aches a lot but a year ago I had a very invasive cervical stitch so may be the scar tissue.
@Rainbowsunshine81 could very well be irritation I’ve just been in a long cool shower running water on the outside of my bits I think I have pessary burn am also considering starting rectally. Have u had any more spotting I’d say those strong red lines are a very good sign.
@lozzmax thank you so much just hoping and praying am absolutely exhausted so hoping that’s a good sign how are you xxx

@Gizmo1983 I have noticed there does seem to be still something there on the tissue paper, like a white/brown.

@v60 I honestly felt exhausted from the beginning and thought the steroids would be making it better - however now I am off them I realise that they were making it better! I started tapering off at 12 weeks, and when I hit 14 I was on none at all, and that's where things started to feel even worse. Thank God I had them otherwise I don't think I'd have been able to get through the last couple of months.

@Gizmo1983 exhaustion is a good sign 🤞🏼 when will your first scan be?

@Rainbowsunshine81 not helpful from your clinic at all. I've always been told it's normal and to try not to worry unless it gets heavy with clots and cramps.

I've had oral progesterone this pregnancy and it's changed my life!!! The CRP clinic prescribe it now - not sure about others but it's worth asking.

@Rainbowsunshine81 thats just old blood u don’t need to worry about that ☺️
@lozzmax I’ve e mailed CRP to see if there’s anyway to switch to oral that would be a godsend thanks so much for mentioning this xxx

@Gizmo reassuring to hear you’re on the same cocktail, tacrolimus aside. I’m concerned about the tacrolimus to be honest, especially when I haven’t tried any other meds before, I wonder if it’s using a sledgehammer to crack a nut but I don’t want to change anything now. I’ll talk to my doctor about reducing the dose asap. Just to mention in case it’s useful - there’s also a depot (long acting injection) version of progesterone. If your tummy is really dodgy it might be worth a discussion to see if it makes a difference.

@lozzmax I didn't really want to hear that from clinic. I didn't know that you can have oral progesterone. I've read on a few things which say it can be normal.

@Gizmo1983 Thank you for the reassurance, I appreciate it 😊 xx

Ugh o can’t sleep with the steroids and I’d love to sleep as it makes the time pass quicker lol

@Gizmo1983 are you taking them first thing?

@lozzmax yes I take them at 7.30 am lol i can’t sleep till about 2 in the morning then once I’ve woken up to take them im wide awake and alert 🤦‍♀️🤦‍♀️🤦‍♀️. I’m stilll pretty new to taking them so will probably get more used to them lol I’m getting plenty of Netflix in anyway 😂😂😂

Hi lovely ladies was anyone told they can just switch taking cyclogest from vaginally to anally. My ivf clinic said they don’t like you to change and to stick to what I’ve started with but mr shehatas clinic have said I can switch so I don’t know who to go with 🤦‍♀️🤦‍♀️🤦‍♀️. Hope everyone is ok and having a lovely weekend xxx

@Gizmo1983 I've switched to the back and apparently it's absorbed the same way. Xxx

@Gizmo1983 I've been told it's fine to use either way so I go vaginally morning and night - and anally midday as I can't easily lie down for half an hour!

Is anyone else really struggling with steroid moon face and general weight gain? I've put on a lot of weight and my face is enormous. I look like the bottom half of my face is pumped up and it's really getting me a bit down, even though I know I should just be thrilled to be pregnant. I'm 16 weeks now and I'm seeing my consultant at 17 weeks to talk about weaning off so hoping my face will deflate a bit when I come off them. I don't mind the extra body weight. It's just my face!!

@Gizmo1983 I’d be curious as to what the reason is for them saying that - is there an evidence base for their advice? I’ve often found doctors sometimes do and say things because that’s “just how it’s done” or they don’t know any different or don’t realise the impact on you as a patient. I’m not a doctor, but imagine mine saying as long as I’m taking it, that’s the main thing, she’s quite pragmatic and sensitive like that though. When I had a HSG, I had painkillers rectally and they were effective - surely it’s going to the same general area, it’s just not relying on the digestive system to get it there?! I’m not one for following a top down approach without a bit of questioning though - I had a heated discussion with my obstetrician with my first DC about not wanting a routine episiotomy because the evidence base is that a tear heals better. She admitted my tear healed beautifully afterwards. I’ve got my reservations about the tacrolimus that I’m on, but I have read the research and know there’s a base for it. Please don’t be afraid to query things when something causes you stress or discomfort!

@HopefulH so sorry to read about moon face! This is one of my concerns too, especially as I naturally have quite a round face, although I don’t think I’ve been on the pred long enough for it to have kicked in. I generally feel rather blimp-like. I’m sure it’s not as bad as you are imagining, it’s just that you’re self conscious of it. I guess these things are part of the sacrifice in the hope of something at the end of it. My husband was looking at my bruised tummy from the clexane last night and remarked about how physically intense all this is…yep…

Hey ladies, wow lots to catch up. Gentle congrats on all the new pregnancies.
had my results for PCOS - which is negative however my cholesterol and sugar are high and I can’t seem to understand it as my diet is generally pretty good. I have been on a bit of exercise diet this week to try and control it - but read with PCO your hormones are affected and you can’t metabolise it as quickly. Started on the pred this week and surprisingly my sleep hasn’t been affected. However I have got my first cold in over a year and it’s horrid - not sure if that’s the pred but seems timely. Gonna start testing next Saturday. Trying to remain hopeful this month, but didn’t have my pre ovulation intralipids.
regarding taking the cyclogest - I think rectally and vaginally are much of a muchness. It is absorbed in the first 30 mins anyway. I refer rectally as less mess and the feeling of being extra damp down there sends me in a spin.

sending lots of love x

Hi ladies so sorry I went awol today I’ve been to a wedding now in the car driving down for my Intralipids tomorrow, it’s mental how far I’m travelling for all this but if it works I’m not complaining.
@hopeful sorry about the moon face not yet but it’s early days for me I literally can’t sleep though I was awake till 5,30 this morning 🤦‍♀️🤦‍♀️🤦‍♀️.
@Rainbowsunshine81 @v60 @HopefulH thanks so much for the peaaaru advice I rang my clinic emergency number they said it was fine to switch plus CRP said fine to switch so I’ve switched bit nervous but it’s done
only still very early here and my tummy is already bumpy and bruised struggling to find a spot to inject without a lump so I can totally sympathise I’m sure I read someone’s clinic got them to move to their thighs maybe this is an option to look into xxx

@Gizmo1983 my new method for blood thinner injections is to get an ice cube and hold it on one spot until it's melted. Then I inject. Seems to stop bruising and I'm now almost bruise free. Instead I just have little pin prick marks. Just thought I'd mention!

@Jecca88 I also didn't like the feeling of being 'wet' as just felt panicked overnight, but anally does feel a bit sore and blocked up sometimes. Genuinely felt like I'd won the lottery when they said they had oral progesterone! Don't worry about ovulation intralipids, I didn't have them and I didn't even start my pred until I found out I was pregnant and I'm now 15 weeks in.

@Gizmo1983 hope intralipids go well

@HopefulH hopefully you can wean off your steroids soon. CRP clinic had me weaning off at 12 weeks. I didn't get moon face but I did meet a girl at the clinic who said she got it badly with her first and it went down immediately once she came off them. I definitely putting on weight but the nausea is so bad that I cannot stop eating!

@Gizmo1983 no worries 👍 I've noticed my tummy is sore in the spots where I inject the lubion. Xxx @HopefulH that sounds good using a ice cube. Xx

Morning all. Pretty anxious today - woke up in the middle of the night with very severe cramps on one side. Went to the loo expecting the worst but nothing. My boobs aren’t sore anymore, I haven’t been nauseous. I should be about 6 weeks today but it feels like schrodingers pregnancy. Got an appointment scheduled at the clinic tomorrow anyway so going to try to think positively today.

Hi @v60 this is such a hard journey I would just keep yourself as occupied today as you can and get yourself through to tomorrow. When I get myself in a right state which is a lot I realised that we literally have no control over these things we can only do so much. My boobs are so off and on this time and no nausea for me I’m really hoping this is the steroids. Lying in my hotel bed intralipids at 9am the weather driving down last night was awful and looks like it will be the same today 🤦‍♀️🤦‍♀️🤦‍♀️ wonder if I should ask mr Shehaha to set up a pop up clinic somewhere more northerly 😂😂😂

@Gizmo1983 Thanks so much for replying - good to know I’m not alone and there’s people out there who understand. Hope your intralipids go well today - got something lined up on Netflix?!

Morning all,
just wondering if anyone knows anyone who has been to Dr Shehata and not been diagnosed with anything. I am still contemplating this one but really scared of the costs involved, ie I am not too sure where the money will come from.

I was also wondering if everyone had to keep going to Epsom? I work in an area where you can’t easily get time off at specific times of year and so I’m worried about the out time. Would be somewhat easier if this was in central London