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 also don’t forget you can take paracetamol and it’s safe. Don’t suffer unnecessarily xx

@comingsoon786110 scans are £290
and intralipids are £380.

@Ifitistobesaid thanks for responding!! Xx

@MyEasterEggs aww thank you. I do feel exhausted. Must have been awful for you too. I'm glad to hear all turned out fine x

@Sezmarelda1 my next scan is now on 16 dec which feels like eternity 😩. I still haven't got any pregnancy symptoms which is making me even more anxious. Yes that's exactly what's happened to me, my son had a chest infection and bcos he's been stuck to me like glue and coughing and sneezing all over me. he's now recovered but Left me all bunged up and unwell. The GP has put me on antibiotic for a week and I checked with CRP if it's ok to take those with all the meds I am on with them and they said it's fine to go ahead. I am pred, metformin, GCSF and intralipids. To be honest they did say to me my pulse is a bit high during my intralipids on Friday so maybe that explains why bcos I had a bug brewing 😬. Feeling breathless must have been awful for you! I'm just so impatient again. I really thought after this scan it would put my mind at ease but then I got ill and it's like I want another reassurance scan 😩.

@Tgrf55 defo my anxiety. Wow covid at 18 weeks that must have been scary. I definitely don't have the flu or covid I think it's just a chest infection and cold. Thank you x

That's the same day as my next scan @Sophi81 😀I really hope you're soon feeling better. I lived from scan to scan at that stage too, bug or no bug I think it's all part and parcel of the anxiety we end up with as a result of all we've been through. It's truly horrible. Sending lots of love x

@LuckyNo14 I didn’t realise it was only 2 doses. When did you take it and were you able to self administer or was it done in clinic?

@InvisibleDreamer i took it January this year. You take one dose then 2 weeks later take the second. It’s a pre-filled syringe with a thin needle. I just done it on my own, it wasn’t painful. I’m sure if you struggled with it the clinic would do it for you though

Hi everyone!

I have a query that I would appreciate if anyone could give me advice on. Im on Dr S's complex plan and i started taking HCQ on 25th November and was told I needed to take it for a minimum of 4 weeks before I could start trying.

I was due to ovulate CD 14/15 which is normal for me but I'm not on CD 19 and I still haven't ovulated. Does anyone know if this is a side effect of the medication or has anyone experienced this before?

I emailed CRP and they said it shouldn't be the cause but sometimes taking a steroid means your body has to adjust to the medication.

Any advice would be much appreciated xx

@LuckyNo14 that is good to know. If I ever get another BFP I’d most likely be unable to travel because of HG so self administrating would be the best option.

@Sezmarelda1 is ur scan at crp too 😃? You never know we might just bump into each other 🙈
Lol yes I hate that feeling. My husband said today oh not long to go before ur next scan and I'm like rolling my eyes to say errr it's still over a week yet 😩. Did that feeling ever go away? How many weeks are you now and do you feel any less anxiety now? X

@InvisibleDreamer I had severe HG in my first pregnancy and was hospitalised several times which eventually ended in second trimester loss. It literally put me off getting pregnant again, I went through severe depression and had to receive counselling. Physically it took me 6 months to recover as I was so weak I couldn't even walk and would tire out after taking just a few steps. But after I recovered I braved it again and had 2 more first trimester losses at 6 weeks so didn't experience HG that early on. When I went to Dr S I made him aware that I had severe HG and he said the steroids will help with that. He was right, in my pregnancy with CRP I had no HG just some nausea which is normal but defo really helped with HG. And this pregnancy I've not had any symptoms yet which is making me super nervous but fingers crossed I'm hoping everything is ok at my next scan where I should be 9 weeks pregnant. X

@Sophi81 I was on pred during the pregnancy but only 10mg unfortunately it didn’t seem to have any effect in terms of HG but perhaps that was because it was a low dose. I also ended up in hospital a couple of times and was in a pretty bad way before it eased off at about 10 weeks which is the time when I lost them. I did hear of one person who said their sickness seemed to be related to how unwell the baby was and they went on to have less sickness in other successful pregnancies so that gives me a little hope. On the other hand it would be a huge distraction in any future pregnancy and I would also be worried if I wasn’t feeling sick. You can’t win really can you! Hopefully all is well at your scan.

Hello again,

Thank you to everyone who wrote me a kind message. I am new to mumsnet so I've not been online much since but I had my first scan last week. I can't believe it, but there was a heartbeat. This is the first time this has ever happened. My partner and I were sobbing with happiness and shock! The baby was measuring one day ahead and had a normal heartbeat.

The scan provided relief for a few days, but I am back to worrying now. I felt very nauseous last week, but it's eased a bit which has made me worry. My breasts are still very big, heavy and sore and I still have food aversions. I also feel the odd twinge in my tummy which makes me anxious. My next scan is next week, when I will be 2 days away from 8 weeks.

I thought I'd feel relaxed after the heartbeat but now I feel more invested in the pregnancy and even more worried!

Hello everyone, thank you to all that replied to my post the other week… it helped me find some strength knowing you all have gone before me. I hope everyone is doing okay?

I was wondering if anyone had been treated for CHI - or if Dr Shehata has suggested this may be a problem for you? At my first appointment he sent me home with info on CHI and he said regardless of my results he would want to treat me for this condition due to my DS having been very born small at 39+4 weeks, and now having three missed miscarriages. I’ve done my research on CHI and it’s scary!

I go back this Wednesday for my results… I can feel my anxiety building and I’m really hoping he finds something wrong that will explain our losses, besides it potentially being an egg quality issue. I have very low AMH so I I will also be getting this result back which I’m dreading. I think he will advise we do IVF to buy some time but we just can’t afford it!

TIA XX

@Sophi81 how are you feeling now? My scans are all at my local NHS hospital. I'm 24 weeks now, and have just stopped the pred completely this weekend. It didn't feel as nerve wracking as the earlier stages of the taper thankfully! I'm definitely less anxious overall compared to the first trimester and early second trimester, but still worry multiple times a day that something has or will go wrong. I can feel some clearer movement now so that helps to reassure me, but as soon as I realise I haven't felt movement for a little while I start worrying again. I guess it's hard not to really. I saw some rainbow babygros a few days ago which I had to buy, hoping this little rainbow baby will get to wear them!

Good luck with your next scan @Welshlady89 , I think we can all relate to those feelings after the scan! The relief is wonderful but doesn't last long.

I'm not familiar with CHI @HopefulH , what does the treatment for it typically involve? Hoping you get some helpful answers on Wednesday that will help you to move forward x

Hi everyone, Please may I join?

I have an appt booked for Dr S for mid January. Please could anyone give me an idea as to what to expect with his treatment plans?

We have unexplained infertility and have had 5 transfers over the years. The 2nd thankfully resulted in my son in 2020 and I am so so grateful for him but the 3 subsequent (from the same batch!) either failed or resulted in an early miscarriage.

Can anyone share what happened at their first appointment and then follow up? What was your plan? Did any of you see him because you struggled to conceive or was it because of miscarriage? I don't think we fit the category of recurrent miscarriage as we had 1 recently and another 4 years ago (naturally). But then I listened to his podcast and apparently he deals with unexplained infertility and implantation failure too.

Can anyone share roughly how much his treatment plans are trying naturally? (After the tests of course!)

I think I'm scared of being told he can't see anything wrong as we always get told everything looks good but clearly something's not right somewhere...

Just reading back through some people's comments...

@Sophi81 congratulations on your pregnancy! I completely feel you with the anxiety aide of things. With my son, I remember each week was a countdown...at 24 I remember thinking "the baby is viable" . You wrote how you were so fed up of the nhs telling you everything was "normal" after your mcs. I feel you. I have "only" had 2 in 5 years but I am so so fed up of being told all my embryo transfers have been easy and that everything looks good. Did you do any ivf? Does Dr s suggest whether ivf is better or whether it's worth trying naturally?

Right so finally taken the plunge and had consult with Dr Gorgy today. So here I am back again bugging you all for your thoughts/opinions! Sorry but it’s so hard to know what to do 😬

They have sent through the suggested tests and pricing & turns out they have recommended over 3K in testing!!!! 😮I was planning on about £1K. Any thoughts out of the following as to which are the most useful/important? I would have asked in the consult if I’d known it was going to be that much!

so far they have suggested:

1. NK, TH1:TH2, leukocytes & DQ alpha (I think I will do this test)
2. KIR genotyping (not sure I need this?)
3. PAIP (not sure what this is???)
4. Something in handwriting that looks like FVSM or FOSM ???
5. High vaginal swab (infections?)
6. EMA/ALICE (implantation? Might skip this?)
7. Endometrial immune biopsy (may do this one)

Any thoughts or personal experience would be most appreciated! Thank you x

@InvisibleDreamer I did:

1. NK, TH1:TH2, leukocytes
2. High vaginal swab
3. Endometrio which covered EMA/ALICE/ERA

Did an endometrial immune biopsy years ago and all okay for me. Bloods were a different story. No idea what KIR, PAIP or FVSM/FOSM is. I’d email back and ask or check the website. They have a lot of info there. Decided against DQ alpha.

Have they suggested anything for your partner? SpermComet? Or has he had tests?

Has anyone's partner done the sperm dna fragmentation test at CRP and needed to see Mr Gordon? Just wondering what he focuses on in the consultation? Is it just lifestyle stuff? Does anyone's partner take impryl - if wheres the best place to get it? Thank you x

@InvisibleDreamer I've not seen Gorgy, I guess I'd weigh up what the treatment would be (like LIT, ivig etc) and if I would afford it or do it if recommended. We paid similar for Shehata's tests x

@VenusStarr my husband did the fragmentation tests at CRP. He was borderline so we didn’t speak to Dr Gordon. My husband took impryl after the results. From what I’ve read, it really improves dna frag for men. We ordered it from fertility family. X

Thank you for replying @Tgrf55I'm hoping it does help. Is it one tablet a day? Dh is convinced he's caused the miscarriages now, but I still think it's my immunes, especially as 2 of the babies were healthy.

I hope you're OK xx

@InvisibleDreamer aww sorry to hear that 😔. I was on 25mg pred so yes maybe that's why. HG is horrible, I really do not know how women get through it! I literally felt like I was dying and then after all that when you lose the baby it hits you even harder. Im sorry to hear you had to go through that also and yes you are right u just can't win either way 🤷🏽‍♀️! Thank you I hope the scan goes well too 😬 xx

@Welshlady89 many congratulations and glad to hear all went well at your scan. I feel exactly the same way, I only get relief for a few days and then back to panic and anxiety😩 it's sooo frustrating x

@Sezmarelda1 ah Ok so you are back with nhs! So Crp won't be discharging me at 16 weeks like last time because of the growth issues I had with my son. But I've still notified my gp and midwife so I'll probably be seen by nhs and crp! Rainbow baby grows awwwwww that's so adorable😍!!!! Indeed they will wear it 😃 xxx

Thanks @MyEasterEggs I think I’m going to do endometrial biopsy as post mmc I keep being told my lining looks uneven and at times is thicker than expected. I’m a bit nervous about having it done in London at a clinic I don’t know though.

Also I think I’m going to go for the cytokines & LAD test. I’ve worked out the other test is called F25M which I think includes thrombophilia, MHTFR & ANA so I shall do that as well. I’m not going to do DQ alpha or the PAIP test as these seem to look at genetic issues beyond karotyping which I think is a step too far at the moment. The treatment for KIR (something to do with NK cells) is GCSF for which there is not enough evidence for me personally to justify either. Hopefully I’ve cut the cost down to around £1500 but will ask my usual clinic if they think I need the EMA/ALICE as well.

Luckily OH had tests with Dr Ramsey last year so nothing required from him except may a blood sample as part of the LAD testing I think.

@VenusStarr Yes I’m trying to avoid the more expensive and less scientifically backed treatments. I just can’t justify spending thousands on IVIG etc…at least not yet. I did explain I didn’t want the more invasive treatments at which point Dr Gorgy said well why bother with immune testing? Have to say I was disappointed with the consult. I wish he had gone through and explained the different tests whilst I was on zoom rather than sending a list after with no explanation of what things are for!

@Sophi81 It’s so brutal when you go through HG and have a loss. I said several times that whatever happens to the pregnancy that I can’t go through it again but I will just have to psych myself up in the case of a BFP. At least I will be better prepared in terms of getting on anti sickness drugs straight away and minimising any physical activity - continuing to try to work made me so much worse.

@VenusStarr just to second my husband also had DNA Frag test, but at a different clinic, one closer to his work. It took 3-4 weeks before we got the results, so he started taking Impryl a good few weeks before the results as a can’t hurt whatever the result. Turns out he probably doesn’t need to take it, but think there is only a benefit to taking it whatever the case!
We also got it from Fertility Friend, tho I think CRP do a deal if you buy 3 months worth.

Sorry meant *Fertility Family website!