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

@Tgrf55 good to hear Professor Akolekar comes highly rated.

@Mabelledox congratulations. Intralipids doesn’t hurt for me although the nurses seem to struggle with my veins a bit. I don’t get side effects but sometimes feel tired the day or two after.

@LuckyNo14 i was under the impression that if it didn’t work the first time they would do it again free of charge? I’m sure that’s what it said in the leaflet!

@Tgrf55 oh really? I’ll need to look out the leaflet. I think if I need to pay for it again then I’ll just go for the SAFE test elsewhere instead. Hope you’re well xx

@LuckyNo14 i just checked my leaflet for you. It says its an error and doesnt mean an issue with the baby. You can get it done again free of charge and there is a 50% chance it will work. I think from what ive read about this previously, some women are prone to this test not working for some reason or another but it's definitely nothing to worry about. They only managed to get just about enough DNA from my blood at 10 weeks.

I'm ok thank you. I've had my 20 week scan and all good. Feels weird not having anything coming up! Just hoping to feel lots of movement and get bigger now and hopefully start enjoying it xx

Thank you so much! I’ll get it again then & hope for the best. I’m driving down there just now.

Thats so exciting! Feel like I’m wishing life away to get to that point 😂 Hope you can get your feet up & relax ❤️

I have my fingers crossed for you @Mabelledox ! I've had pulling and cramping in most of my pregnancies for the first few weeks, even in my successful pregnancy, so please don't assume it's automatically a bad sign, it could just be the embryo embedding itself in the uterus. Good luck with the intralipids today!

Hey @LuckyNo14 thank you so much for checking in that's so kind of you and also so glad to hear of all the positive scans and bfps it's so encouraging and I'm so pleased for you all.

So our results were quite overwhelming and I must say I don't fully understand everything. They found that my NK cell count is high and also that they attack pregnancy cells when in a pregnancy state which means implantation could be compromised. They've put me on the complex plan (humira, pred, pregesterone, intralipids all pre ovulation+ all the extra vitamins and asprin etc). I had the first humira injection this week which wasn't the most pleasant but bearable. Have to wait two weeks before the second one but so far no side effects so fingers crossed. We have a follow up in three weeks with Dr Edge who has been in all of our consultations with Dr S so far and is lovely. She'll explain the drugs in more detail but I feel like an expert already having followed everyone on these threads and feel so grateful to all who've come before and shared so openly. I'm really nervous about all the drugs and potential side effects but equally happy that we have a plan and all being well we will be able to start trying again in December.

How is everyone else? Any tips for someone about to start the complex plan or any learnings that might be helpful.

@Maxime34 I’m glad you’ve got some answers, hopefully all good things to come. Sometimes it just feels good to be doing something that can help. I’m on the complex plan, I didn’t have any symptoms from any of the medications until I had been on the steroids for about 5 weeks continuously & at that I just noticed I was putting on weight & getting a swollen face.
Good luck for a lucky December ❤️

@LuckyNo14 how did you get on yesterday?

@Mabelledox i also experience pulling and cramping, even now at 20 weeks. It sounds normal to me 🤞🏼

@Maxime34 its definitely overwhelming when you first get your results. It’s a lot of medication but before you know it you’ll have your routine and know exactly what you’re doing. I organised a cupboard in my kitchen with all the meds it really helped. It does look like a pharmacy in there though 😂 I also didn’t have side effects from the drugs really. Progesterone made me very very bloated but that could have been the pregnancy as I have suffered with constipation the whole way through (sorry tmi!) the steroids towards the end of the 12 weeks I had a puffy face and gained weight but it all seems to have evened itself out now. Sounds unpleasant but it’s worth it. Good luck xx

@Sezmarelda1 how are you getting on? How many weeks are you now? X

@Tgrf55 absolutely fine, they said that there’s lots of reasons why it doesn’t come back at 10 weeks, IVF pregnancies being one of them. Also didn’t have to pay again! Dr Edge had a look through of all the organs & said everything looks great. Couldn’t see a bladder but she said that’s because it would have been empty & not to worry about it. So not back down for another 4 weeks & I am so looking forward to it! How are you doing?xx

@LuckyNo14 ah im so glad! Will you see Professor Akolekar for the nuchal scan?
I'm ok thank you I'm not back at the clinic until 36 weeks now which makes me anxious as i rely on them so much! But i had my anomaly scan last week and all seems fine. I was anxious yesterday as i hadn't felt the baby move all day but it decided to start punching me at midnight 😂 xx

Think I’ve asked this Q before but my head is like mince so I’m asking again. For those of you who are further ahead in pregnancy, did you have intralipids up to 14 weeks? Or beyond? My clinic have agreed to further infusions at 10 and 14 weeks.

Oh and when and how did you come off the pred?

@Tgrf55 😂😂😂 definitely letting you know they’re okay 😂 no he isn’t available any of the times I’m down. I don’t know if he only works there certain weeks of the month. I really wanted to get one though but I’ll just have to wait for the NHS one now. They need to do cervical length scan next time because I’ve had 2 biopsies in the past. Hoping that’s okay.

@MyEasterEggs my last intralipid will be at 16 weeks. I’ve had them 4, 8, 12 weeks so far. Steroids start to wean at 12 weeks, drop a tablet every 5 days, should be fully off them by 16 weeks. Hope this helps, I think other clinics will do it differently though

Thanks @LuckyNo14 I had my first a few days prior to my FET so mine fall at 6, 10 and 14. I think I’d prefer to drop pred after 14 weeks or maybe even 16 since one of my losses was around then. I’ll be on the clexane and aspirin right up to 36 weeks apparently!

@Maxime34 I found my results appointment very overwhelming. I was on the complex plan (now graduated to the super complex plan!) and it was fine. Not fun, but fine. I've done ivf a lot previously so I was used to taking lots of tablets so if you're not, it can be an adjustment. I have a weekly pill box for AM and PM and when I'm actively doing treatment I have a spreadsheet I print off then tick off. I have a rubbish memory and there's been many a time when I've not been sure if I just took a tablet or not, so this helps me. It's weird, some months I have bad side effects but others none eg first time taking pre I just couldn't get to sleep, but last month was alright. I have very weird dreams nowadays and I think it must be one of the tablets.

Lovely to read of all these positive scans. Sorry to those who are having to repeat tests etc.

Not much news from me. I'm on my 2nd (sort of 4th but first two were cancelled) letrazole cycle cd5.

I'm 19 weeks @Tgrf55! Doing ok but still struggling with poor sleep, I spoke to my community midwife about it but she was a bit useless. I had a couple of days of annual leave last week and it really helped me to re-charge my batteries although I think I will soon need to take more annual leave if the insomnia continues.

I'm glad you're feeling some movement now, that can be so reassuring when you're starting to go longer between scans and appointments.

I'm under a Tommy's clinic rather than Dr S, but I started at 20mg and dropped to 10mg at 16 weeks, then due to drop to 5mg at 20 weeks and stop altogether at 24 weeks. This seems quite prolonged compared to most cases I've heard about though. Do you have any paperwork that tells you what your tapering plan is? It's important with pred not to stop cold turkey if you've been on it a while, so a gradual taper is normally advised.

@Sezmarelda1 yes my plan is to begin tapering from 12 weeks but since I’ve had a later loss I feel uncomfortable about stopping any meds before 16 weeks, so I’ve asked the clinic if I can begin reducing dose later. Just wanted to check in here to see if anyone else had done the same. Did Tommy’s suggest why they went for such a prolonged approach in your case?

Two of my losses were second trimester too @MyEasterEggs so I completely understand your worries and would feel the same about the timing of the taper. I'm not sure why my consultant decided on the longer course of pred or if it was related to my later losses or if that's her standard approach. It'll be interesting to hear what your clinic say and if they're happy to let you stay on pred a bit longer. It's definitely worth asking.

How far on are you now @Sezmarelda1? I’ve just passed 8 weeks so I’m further on than 4 of my losses but still have 10 and 16 to go which feel like forever away. Grateful
to be where I am but I’d like to zip past these difficult milestones 😕

I'm 19 weeks now. My losses were at 5-14 weeks. I was very glad to get passed the 14 week milestone especially, but still don't feel completely safe to be honest. We've still only told 3 people I'm pregnant!

That’s understandable @Sezmarelda1 I think when you’ve been through so much it’s hard to feel ‘safe’. My experiences have taken so much joy out of this pregnancy. I try and allow myself moments to dream and plan because we deserve to have hope but it’s very hard 💛

Well surprise surprise having a lap didn’t make me super fertile. Just realised as well that even if I keep chasing the further immune tests my cycle now means any FET transfer would likely fall over Xmas when clinic is closed 😭

I’ve seen plenty of posts where those with MF issues manage to get pregnant although often with it sadly ending in loss. Plus since OH has given up smoking and got himself fit I would expect that his results are probably back to normal now. So the fact I can’t get pregnant at all I suspect is due to immune issues. Only time I got BFP was when I did FET while on pred. So it’s almost another whole year gone and not even a chance of a BFP. Anyone else want to join my pity party?