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 ❤️

@Gizmo1983 think I've read that too, suppose it's a good thing then! Scan is in 2 weeks so still a bit of a wait

How long have you all been advised you would stay on Prednisolone if pregnant? I've been advised if all was ok in the scan they would start weaning me off, that would be nearing the 7 week point so could be off them in week 8 if all went ok

Sending love and fingers crossed for you both @Gizmo1983 and @Thornters

My hysteroscopy went well - there were just some adhesions in there which came away pretty easily. I showed my brother the op report (he's a doctor) and he said it's the best possible case, that they barely had to do anything so we should be ok to try this month. I know if I ask though they'll say wait a cycle - I just cannot wait any more bloody cycles!!! Have you guys been told after a hysto to wait? Is it irresponsible to try?

PS. @Thornters I'm so sorry for your losses. I don't know about you but I feel like I have to try and keep positive for my daughter, and am so unbelievably grateful to have her that I haven't really let myself get too sad about the losses, which is why I think I've had a bit of a breakdown this week

Hi @Thornters - sounds like our history is quite similar and I’ve just started treatment with Shehata too, although my main issue is Hashimoto’s disease rather than NK cells but still autoimmune issues causing recurrent miscarriage.

I was on Cyclogest with my last pregnancy that I lost around 9 weeks, and decided I preferred rectally in the end for the same reasons as some of the others - less mess and risk of thrush!

Have just done my second Adalimumab injection today, so should be ok to TTC when I next ovulate in a couple of weeks 🤞

Thanks for checking in @Gizmo1983 I'm doing ok. I've been doing more hours this week and led a group session yesterday which knackered me but it felt nice to be getting back into my job.
I realised today that it's 3 years since my first ivf cycle, so 3 years since my baby girl was conceived (we did a FET in the October) 💔 feel a bit weird.
I spoke to dh about ivf but don't think he's quite sure yet. I feel ok about that though at the moment.
How are you getting on?

Congratulations @Sunflower360 ❤️

Hope all is well @Rainbowsunshine81

Glad it went well @lozzmax

Hope everyone is doing well x

Hope all goes well @elarcoiris glad you've done the second jab 🙂

Hi @Thornters were similar ages to you. Its really hard isn't it? X

@VenusStarr Hi, I had my fet today, went well ❤️ just got to wait now until the 29th to do a pregnancy test. Hope you're OK ❤️

Happy Friday everyone!

@Gizmo1983 gosh you are made of strong stuff. I'm so sorry for your previous losses and am pleased to hear that you're now feeling strong mentally. Don't stress about the food - you need to do/eat/binge watch etc whatever makes you feel in any way better. Lovely to hear of some "older" mamas having success - that definitely give😛s me hope. I keep telling everyone I'm still in my 30s but in pregnancy terms I feel the same as you in that I daren't leave it any longer. Best of luck for this month - I guess we'll be testing around the same day but great that you have the next step of IVF if needed.

@Sunflower360 congrats! The wait between positive test and scan feels like an age. Hopefully you've got a couple of nice things planned in and it'll come around in no time. I've been told I'd need to be on the Prednisolone until 12 weeks and then wean off by 5mg every 5 days (I'm on 25mg daily).

@lozzmax thanks so much! I don't know much about hysto after care/how long to wait but so pleased for you that it went well and that all is looking good to try. Fingers crossed you can this month. How long until you ovulate?

@elarcoiris yay for injection - how are you feeling? Great news that you can start trying in a couple of weeks. Do you mind me asking if your 9 week loss was whilst under the CRP protocol or before? I'm scared that I'm putting all my faith in having no further losses now that we've discovered a cause and are having treatment. Thanks for the Cyclogest tip. I went with rectally yesterday and found it quite uncomfortable and then messy in the morning. Did you find some of it came out again when you went to the loo? I'll probably persevere with this method though based on what everyone has said about the alternative.

@VenusStarr Reading back on the thread - thank you so much for sharing your journey. It really resonated with me. I struggled a lot with my first miscarriage (very first pregnancy) and had to take some time off work. I then worked through the next 3 losses but the last one in April hit me in a very different way and I was super emotional and found it really difficult both physically and mentally. My GP signed me off for 8 weeks, which has helped. You are a warrior! Awesome news on leading the group sesh! Anniversaries can hit hard - hope you're able to have a lovely, relaxing weekend.

@Rainbowsunshine81 Best of luck for the 29th!

Just a quick question - is everyone doing the intralipids? Agreed with my partner that we'd do as we're told and sign up to everything recommended (despite him doing a completely unnecessary £250 urine test). I've only had one intralipid session so far but it feels like a very long way to go (I'm in Essex) and a lot of money. When I asked what the difference was between just doing the oral meds + pessaries alone vs with the intralipids no one could really tell me.

xx

MENTS Pregnancy

Hi lovely, I'm currently 24 weeks along and was on Dr Shehata's complex protocol which included 20mg prednisone from confirmed ovulation. I was advised to wean by 5mg every 5 days from 12 weeks. Intralipids continued every 4 weeks until 20 weeks and I was on progesterone until 16 weeks x

@Thornters Thank you 😊 I've had one intraplids infusion so far, which are so supposed to last for four weeks. If the pregnancy test is positive then more intraplids every 4 weeks until 12 weeks.

Hi @Thornters 7im going to be honest and say I’m not 100% convinced the intralipids do anything ilve had them and I’ll have them again and hopefully if I get pregnant will have them ( it’s a 12 hour round trip for me ) but I know mr shehatas nhs patients don’t have them. Just don’t see how soya and albumen ( eggs) can make that much difference as well as the price. Intralipids is the only thing my ivf clinic was absolutely against and won’t agree to they said it was due to the amount of allergic reactions was going to look into the research but then didn’t lol.
@Rainbowsunshine81 how are you feeling are you home chilling out xxx
@Sunflower360 hope all is well you defo get less symptoms with steroids. I know mr shehata said I’d be on them the whole pregnancy but it due to me having a late loss.
@VenusStarr hey sweet so glad you’re still moving in the right direction I find the busier I am the less time I have to think which I quite like. If you go for the ivf will you have to do egg collection or have you got some frozen. I’m at that point it still feels like forever to go but it will get here eventually
love to all and hope you’re enjoying some sunshine xxx

@Gizmo1983 finally home, after a five hour flight. Definitely having a lie in. Xxx

@Rainbowsunshine81 bless I bet you are exhausted hope you’re having a lovely rest. How are you feeling xxx

@Gizmo1983 I slept until about 2 this afternoon and still feel tired, I think its catching up with me. Just had a chilled day today. Feeling not too bad thank you. How are you? Xxx

@Rainbowsunshine81 A good sleep is probably just what you needed. When is your test date ❤️
im
ok thank you I start my norethisterone tomorrow so very first stage of the process I’m very glad to be getting started.
hubby also just inherited some money which will mean we would be able to have another 3 rounds if these 3 don’t work it has honestly been the greatest gift for us it has taken off a lot of guilt/pressure I just hope so much we don’t need another 3 rounds, it’s so nice to have something positive for a change xxx

@Thornters Feeling fine after the injection, although a bit nervous about going back to TTC — has weirdly been quite nice to have a break from thinking about it while we’ve had tests done and gone through phase 1 of the plan. Feel a similar kind of trepidation around hopefully now having a reason for my losses, but not wanting to get my hopes up that it won’t happen again. This whole thing really messes with your head!

In answer to your question, my 9 week loss I was on cyclogest but not yet seeing Prof S. Another consultant prescribed the progesterone as a first step based on my history and some NHS test results but then after that loss I switched to Shehata.

I have found some of the pessary has come out the next morning, but believe that the progesterone is absorbed within about 15 mins and it’s just the waxy residue that’s left. It’s definitely not my favourite experience but I found better than vaginally, where it came out more quickly and had to constantly wear pads. But I guess each to their own!

@Gizmo1983 I think it was for sure. Its the 29th of May ❤️
I bet you're glad to be getting started, because it seems like forever before you do.
Everything crossed you won't need to have those further rounds, but reassuring for you that it will be taken care of. Always nice to have something positive when you have been through so much. Xx

@elarcoiris i found the cyclogest was so much better anally too. Lots less mess xxx
@Rainbowsunshine81 got everything crossed for the 29th ❤️. It’s felt like so long to get to this point and I know we have a loooong way to go yet. We both just need to keep gently busy. It’s my counselling day today 🤦‍♀️. Don’t really feel like it but always feel a lot better when we come out also need to talk to the genetic counsellor because we are doing pgta 🤦‍♀️🤦‍♀️🤦‍♀️. I hope so much this time goes by for you as quickly as it can are you back at work or taken some time off xxx

@Gizmo1983 Thank you ❤️ that's the best thing to do is keep busy, doing things you like to try and keep your mind off everything.
I think it does help talking to a counsellor, you may not feel like it at first, but afterwards you feel like you've got things off your chest 🙂
Just going to keep busy, Potter around, go out and about, etc. I don't work at the moment, I've been a stay at home mum, so that's been good about not having to think about taking time off etc. Are you going to take some time off? Xxx

Hi @Rainbowsunshine81 thats a great idea do nice things that you want to do 😊.I’m not working either am having a bit of a break I am maybe's of thinking training to be a counsellor but i don’t want to start anything with the whole ivf thing as I think it may make things more stressful and I have no more time to wait as I’m 41 in July.
counselling went really well she said I seem so much more relaxed open and happier. I said I am but I dont really know why my depression has lifted straight after my chemical it just doesn’t make sense, she didn’t really answer xxx

@Gizmo1983 that sounds like the right thing to just focus on the ivf 🙂 your counselling session sounds like it went well, it's strange how things can feel and how you feel. I found after my chemical last year I found myself slightly more upbeat after a few weeks, completely different to when I had my miscarriages. Xxx

Hi everyone, sorry I’ve been really quiet lately. I’ve been trying to have a quiet time while I go through an FET, which has failed yet again. 7 transfers now and not a single success (3 on the immune protocol). I’m feeling extremely deflated. I have 2 more embryos to go but I have decided to take a break until the end of the year, I can’t go through this again.

The “good” news is that I can now focus on taking the Humira injections whilst being on latent TB treatment, which Dr S has been wanting me to do for the longest time. It’s a 3-month antibiotic course. I’m not holding my breath in terms of it “curing” my fertility issues, but at least I’d be sorting out my latent TB infection.

Hope everyone is doing ok xxx

Hi @Newbeginnings22023 im so sorry it failed and for all your other losses it’s such a hard and time consuming thing to go through isn’t it. I didn’t realise but we started trying almost 2 years ago and it just blows my mind that I have lost 2 years of a normal carefree life. I hope so much this treatment you are going to start is the key and the next one works one of the hardest things I’ve found in this journey is time, it just goes so slowly and everything takes so long and just drags on
hey @Rainbowsunshine81 i hope you’ve had a lovely day doing something to pass the time can u believe another counsellor called me today from a different department I have counselling coming out my ears lol they were lovely and I just said thank you but I’m ok for now.
ive had a busy day the ivf clinic called to say my protocol has been written for me and Is now in my app. I have a load of videos to watch on each med I need to phone a number tomorrow to arrange delivery of meds and also arrange genetic counselling and an appointment to go over it all in 31st May. So hopefully all goes to plan xxx

@Gizmo1983 just had a chilled today after a long wait in the walk in yesterday, have had this annoying cough for some time now, so went to check ot checked out after having something similar over Christmas which turned into peunomina. Anyway was a complete waste of time as the nurse didn't seem in the least bit interested in what I told her, like how it was worrying me after having an embryo transfer, having intraplids, so she wanted to send me for a chest xray and bloods and I thought there's no way I'm going to a crowded A and E. Just going to see how it is in a day or so, then try to see my own GP.

That's good that you know you have the counselling options there, if you feel the need for it isn't it 🙂 aww its all happening for you then isn't it?, makes it feel more real aswell. I'll have everything crossed that it all goes to plan for you ❤️ definitely sounds like you've had a busy day! Xxx