Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

@Sophi81 thank you so much for telling me this, it has honestly given me some hope when I really needed it and massive congratulations by the way it’s so nice to speak to someone the plan has worked for😊. I am another one brushed off by the nhs 🤦‍♀️.
@Deerdancer34 i asked my consultant about the nk cells and she said if she was my best friend she would tell me to steer well clear and not waste my money. She said the nhs started a trial with steroids and natural killer cells but it was abandoned so no idea what that was.
@MotherOfShihTzus im no expert but yes wait until you get a negative test then one on a morning and one on a night. Do not eat dairy at the same time as you take them and take an hour before bed as if you lie down they give you reflux, I was on them daily for a year and a half for acne and never had any issues they must be working as my skin is looking better 😂😂😂. I feel like a naughty rebel too. 😈
@Pupsandturtles hope you’re ok
had a counselling session today got a Stotting headache after it and had to go to bed but it’s probably me releasing tension. I’m sick of taking vitamins/supplements. Counsellor has given me a new accupuncture lady to contact so may as well give her a go I can feel this is going to be more expense 😬😬😬

Hi everyone how’s it going? @MotherOfShihTzus @Deerdancer34 @Pupsandturtles @Sophi81 ? I’m in the rubbish part waiting to ovulate trying to eat healthy and failing and rattling taking so many supplements.
the accupuncturist I was recommended is at least a 3 month commitment she gets involved with herbs, meditation diet etc which does sound good but I’m at the point where I’m just ready to try ivf now as we will have been trying a year in June and I’ll be 41 in July.
can I ask a favour has anyone done mr S protocol with ivf would u mind just telling me round about when you take the hydroxy and pressure. I e mailed the ivf clinic I want to use and they said they would most almost definitely do it but would need to know what drugs and when. I will get the exact protocol off Mr S it’s just I want to send them a round about idea now and I won’t be seeing Mr S till next month. A lot of planning is involved in all of this isn’t it 🤦‍♀️🤦‍♀️🤦‍♀️

Hi @Gizmo1983 so my 1st IVF 2021, I started metformin late March, hydroxy late April, and continued both through my ivf (weaned at hydroxy at around 16 weeks pregnant I think). Stimmed in June and transferred early July. I reckon it'd be a good idea to be on hydroxy for a month or so before starting ivf as it can make you unwell. It took me a good couple of months to feel more normal (upset stomach, diarrhoea). I would have struggled stimming feeling like this. I'm yet to try prednisone, but I understand it's offered from ovulation with dr S? So maybe at egg collection with ivf? Or at ov if FET

Here's my prev protocol; it does have pred listed here as 5 days before embryo transfer x

@MotherOfShihTzus thank you so much for this really appreciate it 😊😊😊it’s just so the ivf clinic have an idea what the protocol will be. Ugh yes totally get what you mean with the hydroxy I’ve been on it since feb Mr S told me to start taking it the day I met him, I’ve had no major side effects but my stomach never feels quite right anymore it’s definitely not the nicest drug is it. It gave me the runs the first few days and I was going
to take some immodium but I checked and the 2 combined can cause heart attacks so gave that one a miss 🤦‍♀️🤦‍♀️🤦‍♀️
take care ladies hope everyone is ok xxx

Hi everyone. I've not been on here in a really long time. Things have not been going well for me. We've done 2 cycles of ivf (of 3) and got no blastocysts. I have one average day 3 frozen from my first cycle. But I had a better fay 3 in my second that made early blast then arrested overnight to day 6, so I have no confidence in that one.

I've delayed my 3rd and final round but I've ended up mentally crashing and not in a very good place right now. So I'm not sure when I'll feel ready to do the last cycle.

I've missed lots of new people, hope things go well for you all.

@clhiu how are you?

@star2022 thank you for your lovely message a while ago, sorry I didn't reply at the time. I hope you're well.

@Deerdancer34 congratulations

@Lily1990 hope you're doing well.

@Newbeginnings22023 hope you're doing ok?

@MotherOfShihTzus I'm sorry about your last cycle.

I'm still under Dr S, had a review with Dr E a few weeks ago but feel I've got no hope of this ending well for me now. We'd already decided after cycle 3 we'd stop trying. Sorry its not a good update.

Love to all x

Sending hugs @VenusStarr. I've thought about you lots over the last few months and wondered how you were getting on. Things have also not been going great for me and I'm in a bit of a mess at the moment mentally and physically.

I've just started some Fertility Coaching with a lovely lady. It involves hypnotherapy and EFT and the main focus is to help me feel better no matter what the outcome. So it's more about mindset and overcoming the grief and looking to the future with a more positive outlook, even if we don't have success in having a baby. I just thought I'd mention as she might be able to help you too. I can send the details if you're interested? No idea if it will help at this point but I knew I needed some help xx

Hi @VenusStarr weve never spoken before but I’ve read all the past posts and followed your story from the beginning. I’m so sorry things haven’t been going well. We are just about to start ivf after a couple of MCs and since the last one can no longer get pregnant which was never an issue I was doing ok (ish) but then we had our autopsy results ( loss at 15 weeks and waited 8 months for the results) and I have just totally crashed since then. For me my struggle was getting so close to them making it but not being able to get pregnant again and now there’s just a big gaping hole in our lives. I’ll be 41 in July so times ticking. I’m under Mr S as well. I wish I could think of something more to say to make things feel better just know that you’re not alone. One of my best friends just had a baby naturally at 46 got pregnant first try and he’s perfect so I hold out hope but this is so bloody hard. I’m so pleased I got to say hello to you as Ive followed your story and always thought what an amazing strong person you are. Take care of yourself xxx

@VenusStarr I've been thinking about you wondering how you were getting on, its so lovely to hear from you but i'm so sorry things haven't been going great 💔

Did you say you were with Create? Have they given a reason for why this is happening i.e no blasts/slow progression? Did they do ICSI? Have they made any changes between each cycle for your stims? What stims or doses have you been on? Sorry for all the questions, I was with Create 2 years ago so I can probably relate to parts. I too had a very early blastocyst which they had to leave until day 6. Have you ever had your testosterone levels checked?

I definitely think you need to take a break and let your body heal if that's what your body is telling you, you've been through so much now. I also think, maybe get a second opinion for your 3rd cycle perhaps to see if a new set of eyes on your history of ivf rounds can help you suggest a different protocol. I have seen many stories where it simply is the protocol that isn't right rather than egg quality being the actual issue. I'm about to head into my 3rd egg retrieval and start stims next week and can't help but feel so anxious. I'm on a completely different protocol to what I've had in the past so I just hope I respond to the meds.

@HopefulH how are you getting on? Sorry to hear things haven't been well for you either. Fertility Coach sounds fab, this process does all sorts to us and it's quite possible the hardest, lonliest journeys I've ever been on. I'm glad its helping you.

Good luck to everyone and all the newbies since i've been on here last x

@HopefulH that sounds like a really good idea I did some hypnosis myself about 6 months ago to try and persuade my body to get pregnant ( hasn’t worked ) but what you’re doing is a much better idea.
@MotherOfShihTzus @Pupsandturtles how are you guys doing? I hope everyone else is ok ( ish)
im feeling a bit stressed, been waiting via the nhs for a date for my hysterosalpingiogram ( be a miracle if I’ve spelled that right) I finally get an appointment and it will land on day 6 of my cycle and they say you can have them day 6-10 so I’m hoping I will be ok I tried to move it but they have no appointments for months. I know Mr S does them so if it goes wrong then I’m just going to go to Epsom and have it done the same time as my intralipids hopefully they will squeeze me in but if not I’ll have to wait till the month after 😢😢😢. Got meeting at my ivf clinic on Tuesday to discuss ivf with my immune meds. I can not wait to start ivf it will almost be a relief, husband is definitely not as keen. Can not decide whether to pgt test embryos. I’m 40 and had 2 losses one was genetic, one wasn’t so 50/50 xxx

@VenusStarr sorry to hear things haven’t worked out for you. Have you considered trying the Tacrolimus if you get a decent embroyo? xx

Hi @VenusStarr it’s good to hear from you, it’s been a while. I’m sorry the last couple of months haven’t been good your end, it’s really hard.
Since we last chatted I had a natural FET which was a BFN. I’m blaming this failure on the embryo more than anything else. We hadn’t tested our embryos and at my age (41) I can’t expect all of them to be normal.

I didn’t really feel the need to have a consultation with Dr S but I did one anyway. I haven’t told him this but I’m stopping the hydroxy and just sticking with the complex plan. It’s starting to cause hair loss and I’ve tried it now along with everything else, which hasn’t worked. He still thinks Humira would be useful but I’m refusing right now. I may surrender to this if my next round fails, but for now, I’m trying to minimise meds wherever I can. No GCSF either - my immunity was compromised too much in my opinion last time, and I caught a nasty bug for the first time in years. I was in bed for around 3 weeks! Dr S didn’t push for this though, which is good news.

All we can do is keep trying when we feel ready. I met a lovely lady last week who gave birth to her first child at 45, using her own eggs, and only viable embryo they had! Good things can happen despite what doctors tell us xxx

Hope everyone else is ok xxx

@VenusStarr I’m really sorry to hear things haven’t been going well for you. The strength and energy you have to have for IVF especially everything that’s happened in the past is incredible, and to have disappointing results is so hard and frankly unfair. Completely understand why you’ve mentally crashed and need a break. But I’m rooting for you and very much hoping things work out. Would you consider donor eggs or do you think it’s definitely over after the 3rd cycle? Sending love and strength x

Hi everyone, I'm really sorry to hear about how tough it's been for everyone recently. It's really unfair why some things work out and others do not, despite our best efforts.

I know how much I needed to hear positive stories when I was trying yet I'm aware the timing isn't great based on the last few posts. But I'm delighted that our little girl arrived safely on Thursday at 39w5.

I was on the complex plan with Dr S. I think i am in the minority but i already miss taking hydroxy and my gastro and eczema symptoms have flared up since stopping it. Good luck to everyone pregnant and still on their journey to get there. Katy x

Oh @VenusStarr it's such a cruel and heartbreaking journey. It always seems that it's us that want it the most that struggle the most. You are so strong, but it's also ok not to feel strong, too. Everything crossed for this third round - I have seen so many stories of later rounds working ❤️

So happy to hear of your incredible news @KtAgs ❤️ it is always inspiring to hear. I hope the Labour went smoothly and enjoy that baby bubble - you absolutely deserve it! 🥰

Hello lovely ladies I hope everyone is ok (ish)
@VenusStarr been thinking of you this journey sucks.
@KtAgs massive congratulations such wonderful news it’s lovely to hear happy endings I’ve followed your story through the past threads 😊.
@Pupsandturtles @MotherOfShihTzus how are you guys.
had my meeting with ivf clinic today they are happy enough to go with Mr shehatas complex plan but she was dead against the fragmin and took the horrors at the intralipids, she said they’d had warnings against it causing severe allergies she told me to do my own research I’m not really worried about it as so many women have had it it’s more the travel to get to the intralipids which is my problem. I had an impromptu scan ( am 6dpo) isn’t it funny no matter what you know you always hope there’s a miracle baby just floating about in there or is that just me 🤪) anyway I have ovulated from my right ovary and my lining was 9.9mm so I guess these are things to be grateful for. I’m due my hsg via nhs on 8th April which is going to fall on day 6 of my cycle so I’m not sure they will do it if not I’m just going private as I just want to know once and for all if there’s anything to worry about and needs sorting. Everyone keeps saying everything looks perfect and yet since this last MC I just can’t get pregnant. We also got the ivf prices and hubby went very pale I probably did as well 😬😬😬 love and gentle hugs to all it’s a long tiring expensive road xxx

if anyone has any advice I’d be really grateful. I’ve been offered a hysteroscopy by the nhs ( I’m struggling to get my cycle dates to match their availability) or the hyfosy and saline scan from mr shehatas clinic. I’m not too fussed about the cost but is any one of these procedures better than the other I really don’t know much about them xxx

Hi @Gizmo1983 i think they are quite different. Hycosy is to check you don’t have blocked tubes. Hysteroscopy is a camera into the uterus to check for no polyps, cysts, scar tissue.

@Ems123456789 thank you so much. I really appreciate your reply it’s all so confusing. I’m sure they said they’d put some dye through my tubes at the hysteroscopy but to be honest it’s been that long since I saw the consultant I can’t remember exactly what she said. I’m hoping the saline scan will look for issues in the womb then the hyfosy will check the tubes. Xxx I would think the private one would be better than the nhs but not sure

Thank you for your lovely message @Gizmo1983 ❤️

@KtAgs congratulations 💗

@star2022 hope you're OK.

Sorry I've not been back, my mental health crashed. I saw my GP this week and he prescribed antidepressants. It's day 3 and I feel like shite. I also found a local psychotherapist, met her yesterday and am going to start sessions in April. So ivf is indefinitely on hold.

The best news is I entitled CRP and they replied to say citalopram and mental health issues are contraindicated with prednisolone, so they'd need to speak with Dr S. Ice not heard back yet. But I checked with the pharmacist and he said its not 🤷🏻‍♀️ I've asked my ivf Dr what he thinks but he's away until mid-April. I need to prioritise my mental health right now, so just having to park it.

Sorry I've not tagged everyone and answered questions, I've got real brain fog at the moment. I will try and go back soon xx

I am really sorry you are having a hard time @VenusStarr. I’ve not contributed much to this thread but I have been following for help and for what it’s worth, I also went on Sertraline after our second loss and have been on it ever since. It was a bit rough to start, my doctor also prescribed me pills to help me sleep both for the immediate stress of the loss but also because antidepressants can cause insomnia at the start. But after a few weeks that all went away and I do believe it has helped me. It of course doesn’t take the pain and the grief and the anxiety away, but it has helped and I hope it gives you a bit of support too.
I am also on pred and my consultant just said he would keep an eye and to reach out if I felt it was impacting me, which so far it hasn’t. So there are options if you decide you want to do that.
I really hope that maybe has given you even the tiniest bit of support or reassurance at a really shitty time and absolute kudos to you reaching out right now - I know you really generally have to be at breaking point to do so xx

@VenusStarr I'm a nurse, they aren't contraindicated but pred can reduce serotonin. Some people are prescribed antidepressants to counteract this so it's safe to take them together.

Corticosteroids can make some people really really psychotic so that's probably where the MH reference comes from, but lots of folk with severe MH problems are on them for various reasons.

Pred sounds like such a fun drug, I can't wait to try it alongside my Fluoxetine if/when I get a bfp 😂

@VenusStarr good on you for starting some meds, I’ve been to my dr 3 times and each time they talk me out of it. I was doing pretty well till we got our autopsy report about 6 weeks ago and since then I spend my life just wanting to crawl into bed and forget the world exists. I keep waiting to wake up and feel better and it just isn’t happening. I don’t want you to think I’m making this about me I just want you to know you’re not alone as these feelings are sooo hard.

just finished my 2nd cycle under Mr S and got another negative. And decided we are starting ivf in June I just want to get started and it feels so far away still got to have my hysteroscopy. I’ll be 41 in July and just think it all feels bleaker and bleaker but I guess we just have to keep going. Love to all ♥️

Hi all, just wanted some advice please. I’m under Dr S and started phase 2 and didn't fall pregnant naturally in the first month so going to go ahead with ivf at clinic we had already enquired at previously. Has anyone had ivf with another clinic whilst also being under Dr S and did you share all your results from CRP with them? Just nervous about how it will work and whether ivf clinic are all ok with it? Thank you in advance. Sending lots of love xx

Hi @Sprinkleofbabydust me! I've been with 2 clinics and also had treatment with mr Shehata. Consultants have been supportive if it's what I wanted, and most will be aware of it, although most nurses, staff etc won't be. If you can discuss in 1st consultation, ensure they are supportive first before committing to them. Some may not believe in the efficacy, but at least agree it no harm so will go along (in my experience)