Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

@HoldingOn2Hope ❤️ I am so sorry. It's so bloody hard. I still haven't processed my last loss, I just can't get my head around it. All that effort and medication for nothing 😢

Like @StillTrying10000 I did the Endometrio tests with crp after my first ivf loss in the summer. All my results were clear and my era came back as receptive which surprised me as I'd bled so much before Otd. So we added in lubion. But doing the tests did make me feel more confident going into a FET (which once I actually started went out the window). I timed my FET to within 40 minutes and it worked. Just didn't stay pregnant, again. I'm really intrigued to what Dr S will say, especially if the baby is chromosomally normal as I was on pred, hydroxy and intralipids.

I hope you're doing OK as you can be @Tumby and @InvisibleDreamer ❤️ I've not been on here much at all, I need the mental break. I feel numb, not sure what our next steps will be, I can't face making a decision at the moment. Although we need to wait for our cytogenetic results anyway.

Lots of love to everyone xx

@VenusStarr I hope you've been doing okay. Do you know when you should get your results?

Thank you @StillTrying10000 I had an awful week just after Christmas. Got massively triggered and couldn't shake it off for days. I have barely cried though, so it was a release in some ways. Returned to work on Tuesday and had 2 difficult conversations today where neither person knew but I got upset and had to pretend I was ok.
They said results usually take 12 weeks (6 have passed now). I had a few epu visits after my surgery and they checked the system just before Christmas and histology confirmed they had pregnancy tissue, but she couldn't access any further. Tommy's will be dealing with it, so I'll chase them towards the end of January. I'm scared we'll get nothing and Dr S will just say that his plan is OK to try again, but I'm worried the immune protocol failed as this loss is a mirror image of my 4th (same size and gestation - heartbeat stopped at 6+2 this time, but in my 4th pregnancy I didn't get scanned until 6+4 but the baby was 5mm with no heartbeat). Feels like too much of a coincidence to me.

Sorry, that was long. How are you? Have you started your mock cycle? X

@VenusStarr god that sounds awful. Well done on getting through the week! Have you been taking GSCF injections? If not, he might add them on to your treatment.
I'm not doing ERA, only EMMA and ALICE so I don't need to do a mock cycle, it's just the biopsy in 16 days time. I really hope I can get my results fast enough to do a frozen transfer next cycle and not waste a whole cycle. I found out today 2 of my embryos weren't viable so that's been another blow. I still have 4 in the freezer but as I'd love to have two children I'm so scared they will fail again and don't have the funds for another harvest. It just adds on the pressure for my next cycle to finally work which adds stress that doesn't help

@VenusStarr and anyone else who's had EMMA & ALICE tests. I've just been asked if I want the procedure under sedation or not. Do you have any views? x

Hi @StillTrying10000 I didn't have sedation. It wasn't a nice experience and I think I'm holding a lot of trauma from my past losses (dh said I was wriggling around a lot crying and squeezing his hand when no one was touching me). Definitely have someone there to hold your hand. They were really nice though. I saw Dr Jan downstairs after and he apologised for hurting me. It's wasn't a long procedure. I had the era as well, so he had to do it twice.
I was surprised that my results and back within 8 days, I was expecting longer. So hopefully, as long as you don't need treatment, you should be OK 🤞

I didn't get a notification for your other message - thank you. I was going to ask Dr S about gcsf - I don't currently have it but if the baby was normal I'd like to try.
I'm so sorry about your 2 embryos ❤️ I wish things were easier and things didn't cost such a lot of money xx

@VenusStarr Thank you so much for your advice. I think I will go without sedation and just suck it up. At least I only have to do it once. Also great to know how quickly you got your results, I'm desperate not to lose a month waiting for them. Did they just email the results to you or did you have to have another consultation?
In a way that's good that you have another drug to try. He also told me there was another one they could add after that but I don't know what that is. Here's some info on GSCF (Filgrastim), it actually sounded more positive to me than info I read about Intralipids www.preventmiscarriage.com/neupogen-filgrastim-.html x

Geri emailed me @StillTrying10000 but it's just the report from the company. As mine was ok, I didn't need a follow up which was good. I'm not sure if something does show up how it would work, I'm guessing they would prescribe the meds. I hope yours come back quickly with nothing concerning.

Thank you for the link, I'll read properly later. Half of me is tempted to ask for gcsf anyway, my next pregnancy (if I have one) will be my 7th, I'd hate to think there was one more thing he could've used.

The other thing I'm wondering about is my immune system being over suppressed - I was on hydroxychloroquine, intralipids and prednisolone for this pregnancy plus clexane, aspirin, cyclogest and lubion. It's a lot isn't it? It's on my list to ask him anyway but just wondered what anyone here thought? X

Hi everyone - I'm a bit confused on a part of the protocol and hoping someone might just have the answer for me!
For anyone starting Prednisolone and Progesterone from ovulation, it might be a silly question but when do you actually start it?

Lots of people seem to start at 2 or 3dpo to be sure they have ovulated? Last month I started at 1dpo and worried it might have been too soon which could have contributed to it not being successful but the guide just says 'from ovulation' so I thought that would be right. I use the clearblue digital so used that to determine when ovulation should have been xxx

@Trytryandtryagain11 I'm not an expert but I start it the following day after confirmed ovulation. I use OvuSense temperate monitor to identify my ovulation as I didn't often have success with Clearblue. I think the main consideration is the steroids can in some cases effect ovulation which is why you start after ovulation, although some trials I've read about online have given steroids from day 1 of cycle so it can't have too much of an impact. You could always email them to be certain as I'm a bit weary not to be telling you the wrong thing x

@Trytryandtryagain11 I measure my bbt rather than opks (and my ovulation is pretty strong these days), then take progesterone and prednisolone at 2dpo.

How are you @StillTrying10000?

Cd1 today, I'm relieved, this is my second one and it seems fairly normal for me, albeit quite painful. I was really scared that I'd have issues after the surgery. Still waiting for results but it's a bit early to chase them (7 weeks today). I've restarted counselling with Petals, had a tough session this week.

I hope everyone is getting on OK xx

@VenusStarr that's good. Are you trying naturally whists you wait for results or holding off completely?
Do you find the counselling helps even when you have really hard sessions?
I have my test booked in only 9 days now. This is the first month in two years I haven't been able to at least try and I've found it by far the hardest. After not drinking for two years i'm now drinking a bottle of wine every night. It does make me laugh that the clinic said this month is a great chance to recover from all the trauma and drugs I've been pumping into my body, but in reality I'm mentally and physically much worse this month than I've ever been. Self inflicted though ha! I'll need to stop the booze soon as I don't want to risk anything effecting my next transfer if I can try next month.

@StillTrying10000 no, we're waiting for the results first, so am off all my meds at the moment. I think dh does want to try but I'm too anxious (even though we haven't had a natural pregnancy in about 18 months, so it's quite unlikely anyway 🤔) I've booked our review with the ivf clinic for the end of January, more just to close off that FET and see what they think. I'm almost certain they'll say we should pgs test, but we only have one embryo from that round. I think we want to try with superovulation for a while. Its 7weeks today and the hospital said 12 weeks for results, so think I'll chase early February.
I basically cried the whole session on Monday, it was really hard. And I'd actually thought I wouldn't have much to say. So I guess she's helping me dig deep but it's uncomfortable. I'm doing yoga with Adriene this month, so I immediately did that after the session and that was a good distraction, otherwise I'd have just cried the whole night.

Don't be hard on yourself with the drinking ❤️ I'm glad you have your test booked and that's a focus. I've found not ttc difficult in the past but at the moment I'm OK with it. But I know how hard it can be and my mood would really drop, it just feels like a waste. I hope these tests give you some answers or even reassurance (mine was more reassurance) and you can move forward with your FET. Xx

@VenusStarr thank you. That's sounds tough, well done for finding some good coping mechanisms though. Will be interesting to see what they say at your appointment. It doesn't seam worth it to test if you only have one. I've tested my embryos's but still had a chemical so it doesn't seam to have helped much apart from knowing that I didn't waste my time on the ones that were 100% genetically dodgy. x

@Trytryandtryagain11 your question has really got me thinking about the timing. Like you say, the paperwork says to take 'from time of ovulation' but that's tricky to get right.
I have super ovulation with the clinic, so they tell me when to trigger, and I have to start taking everything 2 days later. I always thought you ovulate 24-36 hours after the trigger so it means I'm taking pred and Cyclogest from either 1dpo or ovulation day......I wonder if it's too soon? But then I don't think they'd get me to start if it was too soon.

I think I'm just trying to find a reason why it's not working! 4 cycles down now and feeling super deflated. I emailed the clinic to ask if I can chuck money at anything else to help and they said no 😭. I just want it to work.

@VenusStarr I love all the things you are doing for yourself, I think along with the counselling you'll feel a real difference when it comes to trying again.

Sending lots of love to you all ❤️❤️

@VenusStarr sorry you are still having a crap time. I do think PGS/PGTA testing is worth it rather than transferring a embryo that definitely can’t survive just in terms of avoiding the trauma of further miscarriages. However it is expensive and it may be too costly to do for one embryo. We are embryo banking now and PGTA testing either at the end or possibly as we go depending on number of embryos. I think it is worth it for us as OH has highDNA fragmentation so I would think we will we have a lot of genetically abnormal embryos. It also could explain why I don’t get pregnant naturally - I think my eggs are just rejecting the sperm because it is damaged, but who knows.

I'm so sorry superovulation hasn't worked for you yet @myrainbowjourney. It's really stressful and I found it hard going when we tried just the once. I hope this month has a good outcome.
Thank you for your kind words too, I'm just trying to take each day as it comes and minimise my stress levels.

Thanks @InvisibleDreamer I'm still undecided about embryo testing, I know 2 people who have immune issues who have lost normal embryos around 6 weeks. One found a lot more issues (immune and endo) after further testing and the other was told it was just bad luck to lose a healthy baby, despite the immune protocol. I think the cytogenetic results of my last loss will help me decide, if it was a chromosomal issue, I think doing embryo banking and testing may be the way we go. I just feel like it's something my body is doing rather than an embryo issue (I might be wrong).

Thank you @VenusStarr. I just really thought it would happen by now, sort of feels like it never will as it hasn't already.
Kicking myself for having my booster as I was worried it would affect my cycle and I only had one follicle last time. They were happy with it but I was so disappointed. Really hope he's right about more chance these cycles. They keep saying there will be other options after but I'm not a bottomless pit of funds, sadly. And emotionally it's really tough.

Ugh why is it all so difficult xx

*one follicle being the cycle I had the booster. Annoyed I didn't listen to my gut and just leave it 😢

What dose are you on @myrainbowjourney? He put me on 7.5 to start, which I thought was quite a high dose, especially for my first go. But I think that's the most I'd want to try. I know someone who got 3 follicles first time (like me), it didn't work so was put up to 10 and she just didn't get any response at all and it threw her cycles off for a few months.

I hope the booster didn't impact on your cycle - it's hard not to be critical of decisions we've made isn't it? 😔

Depending on our baby's results, I think I want to try the gcsf injection, but it's so expensive and if we also need more ivf on top of that, I've no idea where we'll get the money from 😢

I hope this journey gets easier for us both xx

That's interesting @VenusStarr. I'm on 10mg. I think he did it as I have just the one tube so we want ideally 2 each side so I have more chance. The time before the last, I had 4 - 2 each side, but one of the 2 on one side was too small. So I was just gutted when the last time was just the 1.

Now it's passed, I hope it was the booster and so this cycle I'll have more again. You're right though, every decision now I analyse. Having a drink over Christmas - am I just wasting the cycle? It's crazy, and takes over everything.

What is the injection? Are you having ivf with the clinic linked with CRP? Sorry, you've probably said before.
I think he'll suggest ivf for us next, and like you, I have no idea where the money will come from. It's so hard when you save money to be able to do things with your family and then spend it all trying to even get to that stage.

I also now regret not getting my other half checked, but he didn't say it was essential. Now I'm worried that's why we aren't getting pregnant and we are just wasting money.

Gosh it really messes with your sanity. Definitely keeping everything crossed for an easier journey for us from now 🤞🏼🤞🏼 xx

We didn't test my dh either @myrainbowjourney I don't think for us that is the cause.

I hope this cycle you get more of a response. You just want to give yourself the best chance.

We had nhs funding, so we're referred to a local clinic. I live too far away to realistically do ivf with crp. I have spoken with Mr Jan a few times though. The gcsf injection is something he uses for unexplained recurrent losses. You can sometimes get it as a wash in the uterus, I think it's mainly used in ivf that way and I don't think Dr S does it, just the injections. But it's expensive - about £80 per injection. If you Google it, crp comes up as the first result with a copy of the patient information.

Dh wants me to chase our baby's results next week. I'm scared to find out either way. If it's chromosomal, I'm not sure where that leaves us. But if it is, we'll just be on the same plan and that scares me too. I doubt they're back yet anyway.
I just wish none of us had to go through this and the uncertainty xx

@myrainbowjourney just so you know we were told we had to pay for hubby to have him sperm tested before IVF but when you have IVF every cycle they give us the same report as they look at the sperm to decide if they need to do IVF or ICSI with that sample so it felt like a total waste to have paid for the test before.
@InvisibleDreamer just something to consider- if you want to do PGT tests it’s worth doing it right away as better to take the sample of the embryo's before they are frozen otherwise you have to have them defrosted for testing and then defrosted again for implantation and that can cause some damage. Two of my embryos had inconclusive results so they had to defrost them to test again and neither made it :-(. Unless you have tonnes of beautiful embryo's of course- good luck ☺️

@StillTrying10000 yes our clinic our taking the samples on day 5 before freezing. Just waiting til Monday to find out if we get any blastocysts this round.

@InvisibleDreamer ahh good luck! xx