Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

🤞 For you @myrainbowjourney I think any follicles you have over 18mm will be released with ovulation.
We skipped dessert last night as we ate dinner to late. He made a gypsy tart which is pastry with condensed milk, think it'll be very sweet!

I think af is on her way, started sitting this morning and got that heavy feeling, so I just took the sitagliptin with my vitamins, I'm sure it'll be here properly later today or tomorrow.

Spotting! * my spelling is awful today! 😂

Hi all,

I am on Dr Shehata's complex plan of prednisolone, progesterone and intralipid infusion and superovulation. I have noticed a change in my bowel movements since being on this medication. Sorry for TMI! Has anyone else experienced these side-effects?

Hi @StarGal88

I'm on the same plan and haven't noticed that. I think some people respond differently to pred though so it probably isn't uncommon. Have you managed to pinpoint which stage you get the change?

@VenusStarr has AF arrived yet?

I'm having a rubbish day. I've had to get antibiotics prescribed for the UTI as it came back after easing and I have blood in my urine. The clinic said I was fine to take as long as safe with my treatment. The GP told me they are safe in first trimester but didn't say about the meds. When I asked she just told me I need to clear it as UTIs can cause miscarriage. Great!!
I now don't know if to take them or not xx

I'm sorry you're not having a good day @myrainbowjourney what antibiotics are they? If they're safe for pregnancy I'd take them. In my last pregnancy I got a uti at 4+1 and my GP prescribed pregnancy safe ones. I can't remember the name though, but I think I'd recognise it. I'd take them ❤️ did your trigger go OK?

Af did arrive about lunchtime yesterday. I don't know if it's the new meds, but I'm shattered, feel very low on energy and like I just need a lie down. I don't normally get like that when I'm on, but it is a heavy, more painful one this time.

@StaGal88 I have occasionally found cyclogest to have that reaction for me. But not all the time. I tend to use it vaginally now and it's better for me that way. X

@myrainbowjourney this is this first cycle of using these meds. I had my hyfosy procedure and intralipid infusion 2 weeks ago. I started these drugs on Friday and have been since then.

@VenusStarr i am already taking them vaginally - so don’t understand why

@VenusStarr they are nitrofurantoin. It's only a 3 day course and I really do need rid of it.
The trigger was fine, a bit more uncomfy than normal, but it was ok. I just really hope to have some luck this cycle. But let's see, want to try and stay indifferent for the next two weeks so it's not so distracting.

Oh gosh, look after yourself with the tiredness. These meds can really interfere with our 'normal'. How many weeks until your appointment now?

@StarGal88 I do think the pred can have a lot to answer for too. Hopefully once your body settles into the meds you'll be ok

Xxx

I don't recognise that one @myrainbowjourney I hope it works. It's really hard to not just go through the motions. I'm holding hope for you ❤️

Just under 3 weeks for our appointment now. It's my dh's birthday in a couple of weeks and we've booked the week off and got a few nice surprises planned for him (he's 40). So I'm looking forward to that. We'll go down a bit early and get lunch on the day too. Feels like forever since we last went, it'll have been 5 months. Xx

@VenusStarr thank you ❤️. I'm kicking myself for not being more positive but I think it's drilled in now - the expectation of it not working and just rolling into another cycle.

The appointment is coming round quick, and your week off sounds lovely.
How long is your journey to the clinic? xx

Don't be hard on yourself @myrainbowjourney it's a protective mechanism ❤️ you can't force hopefulness. Just try not to get too tied up in your feelings.

We're about 3 hours away, but I like to leave 3.5 hours, just in case the M25 is bad. It was horrible when I had the Endometrio tests last August, my appointments were 7.30am 😴
How long does it take you? Xx

@VenusStarr yeah you're right. You just hear so much about being positive as if anything else ruins your chances but I know that's not true. I think I'll have to distract myself with things for the next couple of weeks.

It takes me 50 minutes on a perfect run, but usually a bit longer than that. Again it's usually the m25 that's a killer!

You've done all you can now @myrainbowjourney hopefully these next couple of weeks pass quickly. I genuinely don't think how we think has an impact. I've had cycles where I was convinced it had definitely worked and it hadn't. In my recent pregnancy I was absolutely certain it had failed but it hadn't, it was pretty textbook.
Definitely keep yourself focused on things you enjoy :) xx

@myrainbowjourney hope the antibiotics do the trick and that you feel better soon. Are you taking probiotics? Optibac do a good one to take with or soon after antibiotics but any probiotic for women’s health would be good I imagine. Sorry if I’m telling you what you already know! And I have to take antibiotics as part of my pregnancy protocol so I wouldn’t worry about that. Also wishing you a speedy couple of weeks. I remember the wait well and have no words of wisdom but I don’t think positive mental attitude makes a blind bit of difference to the outcome. Line up some feel good activities if you haven’t already 💛

@VenusStarr I’ve been so weary too. Last week when I had my period was tough and I wonder if it’s down to being on a new drug plus the change in nutrition and supplements. I thought I’d feel healthy but I’m blooming knackered 😅

Finally got a call from the clinic to arrange a call with nurses. They’ll share my protocol in advance, which is a relief, with all drugs being ordered in two weeks. I had assumed my prescription would be based on bloods and scan but I guess there’s a basic protocol for anyone with a similar history/profile to me? So I think EC is around the corner! Just need to get a handle on the self-sabotage now…

I'm glad things are progressing for you @TheHopefulEgg I felt much better once I knew the plan. I think they generally have an idea of the drugs you'll need, but depending on your scans they may increase or decrease the dose as you go. I'm sorry you're feeling weary. My period really knocked me about this time.
My best advice for ivf is as long as you are doing your meds as advised, you're doing all you can ❤️ the worst part for me was waiting for fertilisation and updates on embryos. I booked that time off and tried to go out for a walk everyday. I'd have struggled to concentrate on work.

I hope you're doing OK @myrainbowjourney are you still having symptoms of cystitis? Hope the antibiotics are helping. Xx

@TheHopefulEgg @VenusStarr thank you 🥰

@VenusStarr the symptoms have definitely eased but I keep getting the feeling of thrush, which obviously is common with antibiotics. I'm hoping it just passes. But I do feel much better, thank you.

I'm definitely going to keep busy for the next 2 weeks. I currently have no real plans, except Sunday lunch out this weekend. I need to get booking things in. I think I might just find binge worthy tv too so I can always tune into that if I'm struggling.

It feels refreshing to be out of the crucial time, so I can just forget about it for a while.

How are you doing?

@TheHopefulEgg I'm not taking one but I did order one last week that annoyingly hasn't arrived yet. Hopefully it'll turn up this week.

It's so exciting you are about to get your protocol. Countdown to egg collection!
What do you mean with self sabotage? Sorry if that's a triggering question for you, you don't need to answer

xxx

@TheHopefulEgg I'm glad you're getting your protocol. It's horrid if you are a planner as the drug levels can change
daily depending how you respond. I now get an email every two days with what drugs to take for the next couple of days, you just have to try to go with it.

@myrainbowjourney I'm so pleased you're getting it sorted. The bloody thrust after UTI! Every time! One thing gets treated and the other appears.

Dr S has suggested I think about Adalimumab Humira but I don't have TNF cytokines. Has anyone else ever used it without having TNF? x

@VenusStarr absolutely, even a basic idea of drugs will be helpful, and once I have a loose plan I think I’ll be able to let go a little. It’s all just so new to me. And the journey so far has been overwhelming (understatement) so it makes me question what I’m getting myself into. Hope you’re feeling more energised? I finally started to perk up yesterday!

@myrainbowjourney with the self sabotage, I just mean turning to things that are unlikely to support me; eating more, moving less, sleeping poorly. When I’m fearful (and my main fear is pregnancy loss) I fall into unhelpful patterns that hold me back. So I’m trying to stay as focused as possible. How are you feeling?

@StillTrying10000 I guess it’s just about having the right balance of info. I can cope without knowing the specifics, it would probably overwhelm me, but I’ve had zero from the clinic about protocol. Communication hasn’t been great and they ought to have told me more about their process, I think. I’ve been in the dark over the last few weeks. But I’ll have a rough idea by Tuesday when we chat with the nurses so feeling more positive!

Had a curve ball thrown my way today as my consultant is likely to be on holiday for most of my treatment cycle. I hadn’t expected him to be present the whole time but now it’s unlikely he’ll be doing egg collection so I had a wobble today. We went to him, to be honest, not his clinic. But I managed to compose myself and have asked who will be my consultant so I can refocus. This is such a big step (and outlay) and while I know I can’t control everything I feel like so much of this is out of my hands. I suppose there are pros and cons to that! Sure I’ll feel better when I’m on my way and getting going 💛

Hello everyone,

I've been reading this thread (including some of the previous pred threads) recently and hope you will let me join you on this horrible journey we all find ourselves on. I'm so sorry for everyone's losses, there are a lot of very courageous people on this thread.

I've had four miscarriages myself.

My first was a MMC in my first pregnancy, discovered at my 12 week scan (baby measured approx 6 weeks).

I then had a second miscarriage 10 months later, we'd seen a heart beat around 6-7 weeks but I started spotting around 9 weeks of pregnancy and a re-scan showed no heart beat and growth had stopped at 8 weeks. I had recurrent miscarriage blood tests done at this point which all came back normal.

I conceived again on my next cycle and took aspirin from around 6 weeks after having some spotting and feeling desperate that I needed to do something differently to the previous pregnancies (NHS offered us nothing). I went on to have a complicated pregnancy with pre-eclampsia and inter-uterine growth restriction, but I delivered my healthy baby boy after induction at 37 weeks.

I really thought after that success we stood a good chance of success in future pregnancies too, but I was wrong. When we started TTC again last year I sadly suffered a second trimester loss at 14 weeks. I had been taking aspirin from around 8 weeks (my doctor didn't really approve). The cytogenetics showed it was a chromosomally normal baby girl. My local recurrent miscarriage clinic seemed generally supportive but could offer us nothing other than extra reassurance scans so I pushed my GP for a referral to Prof Quenby.

We were lucky to conceive again very quickly before seeing Prof Quenby, but I had another loss at 14 weeks. So two 14 week losses in the space of 5 months :( That was about a month ago so it's all still quite raw. I took aspirin from a positive pregnancy test and progesterone from 7 weeks (following a bleed) for that pregnancy. I pushed to get the cytogenetic results back in time for my appointment with Prof Quenby at the end of Feb and was told it was a chromosomally normal baby boy.

Prof Quenby didn't have much hope for me but has recommended I take prednisolone and progesterone from positive pregnancy test next time, and aspirin from 10 weeks due to the previous pre-eclampsia. She didn't run any tests but she thought that I may have immune issues given that I already have an autoimmune condition (although that's under good control). I already take an anti tnf-alpha medication for that condition, which is very similar to Humira.

I'm just so exhausted by this all and the anxiety it has left me with is completely overwhelming at times. I feel so lucky to have my son and know I should probably just count my blessings and stop here to prevent any more heartache, but that maternal drive to complete my family is so strong it's hard to ignore, which I'm sure you're all likely to be able to relate to.

I know most of you have much more complicated treatment plans so it will be interesting to see how everyone gets on. The success stories have given me so much more hope. Hopefully there will be many more success stories to come!

@TheHopefulEgg your words about self sabotage could have been written by me. When I started all this I was keen to fuel my body well, eat more veg etc etc. But the more time goes on, I realise I'm not really looking after myself at all.

I hope you've managed to avoid any of this!

How are you doing? News from the clinic?

I'm fine thank you, still a way to go before I test. Just don't want to even bother 🙄 so negative. I need to snap out of it!

@Sezmarelda1 welcome to the thread and I'm so sorry about your journey so far, I can't imagine how tough it's been. Don't feel like you can't long for another baby because you have one. You are allowed to want another, so don't feel bad about that.

Your protocol sounds similar to mine, and at least you didn't have to go through/pay for all the tests. Why did the doctor say there was no hope? That doesn't sound right at all.

xxx

@myrainbowjourney thanks for the welcome :) I think she was just trying to be honest with me, that in her experience she hasn't seen much success in people with histories like mine. In some ways I like that she wasn't giving me false hope, but at the same time it wasn't what I wanted to hear either :(

I'm glad that despite her doubts she's still willing to offer me something extra to try (the prednisolone). Despite the four losses I still have hope because of my son who survived. He shows that it is possible, which is something I've clung on to through my last two losses x

Hi All
Just wondering if anyone can help me. I'm under Dr Shehata on the immune treatment protocol. I started prednisolone following ovulation but I've just tested positive for covid. This is my first month on the treatment protocol so not really sure what to expect. Obviously I'll ring the clinic tomorrow but does anyone have any experience of this happening? Will I have to stop the prednisolone/ abandon treatment this month?😔 I'd be so grateful if anyone knows what they're likely to say if you could let me know xx

@Sezmarelda1 I can relate to that longing you feel. We conceived our daughter seven years ago and I often feel like I should count my lucky stars and stop putting myself through this because we’re so fortunate to have a child. We lost our son at 16 weeks in 2016 and had five further losses over three years, so it’s been a hard road, but after a long break from TTC I know in my heart of hearts that this isn’t over for us. It might not end in the way we hope it will, but I think I’ll be able to accept the outcome if we've done all we can. Despite so much loss and grief my partner and I have a real desire to carry on. It’s primal, this drive to continue even when the odds feel stacked against us.

@myrainbowjourney I think it’s hard to strike that balance between nourishing ourselves and comforting ourselves. Drinking smoothies every morning or eating what my nutritionist calls “egg and sperm” salad 🤢 (basically rainbow salad) every day is driving me mad. I’ve been at it for weeks and weeks! So tonight I had a salt and vinegar crisp sandwich because I just needed something to soothe me.

I’m feeling anxious tonight so will no doubt be up late preparing notes for my nurse consultation tomorrow. We’re about three weeks away from starting stims so chatting about protocol then ordering medication. Decided to start using ovulation sticks to help me plan for the trip, which is a bit triggering in some ways. When do you test?

@WillowTree0721 I’m way behind everyone here as awaiting repeat immune tests and haven’t had treatment yet, but hopefully someone will be along to help soon!

@myrainbowjourney

@VenusStarr

Sorry for not replying until now. Social media has been deleted and actually had a nice weekend when in laws came up. Am now planning furniture to go in back bedroom. Setting it up as a study, maybe one day it will become a nursery but I’m not getting hopes up.

Unfortunately things have not gone well with this round of embryo banking so far & OH has tested positive for Covid. I also now have a lining issue which has developed post miscarriage. I think I’ve given up now on the IVF working, I wish we had never gone down this road really. Now I know what it’s like to be pregnant I don’t know how to cope with never having that whole experience.

I hope everyone else is having a more positive experience, it would be nice if my bad luck could be balanced out with some good luck for you guys.

@InvisibleDreamer it's nice to hear from you. I'm sorry you're having such a difficult time at the moment ❤️ with your lining, do they suspect some scarring?
I just wanted to say I completely resonate with what you're saying about pregnancy. We've been ttc for over 4 years now and when we initially started we couldn't conceive. No way do I think we'd be still doing this if I'd never been pregnant. I think we would have made a decision a long time ago. But I think having experienced pregnancy numerous times and not getting to hold our babies is so hard. And I'm just not sure what our future looks like. I always thought we'd look at adoption but more recently I'm uncertain I want to go down that route.

I don't have anything to share, we're seeing Dr S in 2 weeks. Time is passing very quickly.

How are you @myrainbowjourney are you close to test day? I hope you're doing OK.

@TheHopefulEgg how are you getting on?

Lots of love to everyone ❤️ xx

@VenusStarr I hope the next two weeks continues to go quickly for you. I don’t know what is wrong with my lining I’ve just been told it looks very patchy & uneven and I will need a hysteroscopy. Now I feel like I made the wrong decision having a D&C and that may be the cause but I don’t know. If I'm in that 1% that has damage I think I will scream. I probably had a bigger chance of being hit by lightning last year than having ivf, HG & a miscarriage.

Yes I could have done 3 rounds and not got pregnant and walked away. That was the plan if it didn’t work. Now it’s not so easy. I am interested in adoption however it can’t take away that longing for your own pregnancy. I don’t know how you have coped with multiple losses. I already feel like this process has taken much of the joy away from life.