ERA/EMMA/ALICE Testing Thread 3

[Janefx40]

Hello all,

This is a continuation of the ERA/EMMA/ALICE Testing thread.

New posters are welcome. On here you will find a group of women who are either doing these tests or have done them already and are further on the journey

This is the friendliest and most supportive group so feel free to join and post

Xxx

@SUMMERTIME02 just start the vaginal probiotics tonight, if your period starts then you can either carry on with them or have a break until the period has become lighter and then restart again. My opinion is you can't have too many vaginal probiotics, so if you get your period you can do a full 10 days from when you restart.

@seven201 does a finger prick mean you prick your finger and then the drops of blood fill up the vial to a certain level. I'm not a lab worker or anything but I think having a blood sample taken would be better, can anyone take your blood for you?

@VenusStarr sorry about the painful period :( what happens with the sitagliptin, do you start with your period and carry on for 3 months?

So unfortunately the immune blood samples did not make it to the lab today, the last time I sent the samples it was there the next day. It's currently sitting in Milan. I spoke to the delivery company and they said there is nothing that can be done and that it will get to the lab tomorrow. No idea if that will have an impact on whether the lab can use the samples, but I can't do anything about it now. It would have been good to have one less pressure and know the lab were processing a fresh sample.

@Gardenlady543 thanks for the advice, i just wish i had taken them sooner rather than later. I really hope theres not negative effect in taking them with such a gap after the antibiotics.

Did you have a delated period following your emma/alice?
I actually had an early period (22 day cycle) as a result of the biopsy, but i was expecting this month to be back on track.

@SUMMERTIME02 as long as you take the course of probiotics, I'm sure it doesn't matter too much that you had a break.

@VenusStarr hooray for period arriving but poo to pain! That was meant to say boo but poo works too!

@Gardenlady543 noooooooo! I can't believe the sample hasn't arrived after all your hard work. If you can centrifuge your own blood, whilst semi unconscious surely they can deliver a parcel!! Fingers crossed it's all ok.

I got my Mr S treatment plan through and it doesn't look like I'm doing any treatment like Humira or hydroxy which is great but a) I didn't need to pay £2.5K to get a prescription for pred - my consultant would have done that for me anyway. b) now the fact that I messed up the noresthisterone and that I have Covid is bloody annoying because I could have started next week otherwise with the transfer. Appointment to talk through results is tomorrow so will learn more then. BTW results are obviously the same as Chicago tests so did I really need to repeat them all?!!!

How are you feeling @Janefx40? Interesting that your cytokines are normal now? My ivf clinic wouldn't prescribe the same dose of pred that Dr S does, they only felt comfortable with 10. Is it your nk cells are high or overactive / both? Hopefully he'll explain more tomorrow. Were you essentially on the same plan already?

I'm absolutely shattered, not sure if it's my period (never feel like this) or if it's the sitagliptin, could do with a nap!
I'll be on it for 3 months @Gardenlady543 worked out we could plan a transfer in my June cycle, which means I need to start getting things organised in May as I'll need to see our ivf consultant to agree my protocol and have a nurse appointment to get my meds. It's not far away really.

I'm so sorry that your bloods haven't got there yet :( @Gardenlady543 you're very calm, but I guess you have to be because you can't get them there quicker. I hope that the lab can still test them. So frustrating for you.

@VenusStarr yes it's weird because my cytokines aren't normal but he hasn't put Humira or hydroxy on the treatment plan. Maybe it will be written elsewhere. I'll ask tomorrow.

I'm feeling ok. I felt quite rough at various points today but fixed with a couple of paracetamol. Now just have quite a streaming cold. Will see what tomorrow brings...

Surely the sitagliptin couldn't have had an impact yet could it? Hopefully any side effects will settle down if it is that xxx

Hi again everyone.
I'm not as active on here, so takes me a while to catch up.
@Janefx40 we sound a bit similar.
I had very detailed immune bloods with Dr Gorgy London( 2.5k stg), and my NK activity and cytokines are also up. TNF alpha- IL10 is 39.7. How is yours? He advised hydroxychloroquine 200mg twice daily for 8 weeks minimum which I started 2 weeks ago. The idea is to recheck the cytokines then and see if improved and then likely 30mg prednisolone for transfer with intralipids or IVIG.

Not sure if that helps at all.

So as usual I'm back to waiting. What I do best...sigh. at this rate it will be the end of ssummer before a transfer I think.

And my last transfer was in November. Everything takes so long!

But part of me isn't ready to do this transfer, as it is our last embryo..

Keep well girls, keep the faith

X

@Littledream hello! It's so hard having to wait endlessly isn't it?! My TNF-alpha IL10 was 39.6 so I don't know why he hasn't suggested Humira or hydroxy but I can ask tomorrow.

My hysteroscopy showed everything is perfectly normal so with that, my genetically tested embryos and spot on microbiome we're pretty lost as to why the IVF is still resulting in chemical pregnancies. I can't wait to hear what Dr S thinks later on. Luckily I'm only 20mins from the clinic so I'm already back home. Good luck to the others with their appointments today.
@Gardenlady543 any update on how far your samples have got? x

That's good news @StillTrying10000 although it does leave you unclear. I hope Dr Shehata can hove you some insight and hope moving forward. Will you be starting stims tonight?

That is weird @Janefx40 my cytokines are normal but my original plan was hydroxy but then he added in prednisolone. But even the combination of both didn't work. What time is your appointment? I'm glad you could swap it to zoom, hopefully you're feeling better today.

It's mad how quickly time passes @Littledream it's already been 5 months since I had my transfer in October. My next one is hopefully in my June cycle.

I hope your bloods are where they need to be now @Gardenlady543

How are you @seven201?

Lots of love to all ❤️

Glad the hysteroscopy is done @StillTrying10000 and glad all is normal although yes that leaves you with more questions. Let us know what Mr S says.

@VenusStarr in my first consultation he said he would give me Humira if my cytokines were raised. I will find out more later (3pm)

Xxx

🤞 For you both for your appointments @Janefx40 @StillTrying10000 xx

How did your appointment go @Janefx40? Hope you're a bit clearer on your plan.

Did yours go OK @StillTrying10000? I hope everything is on track for your next ivf cycle and you're feeling OK x

@VenusStarr it was pretty miserable to be honest. He was in a foul mood which didn't help, I think it was the end of a long day for him. He was just saying the same things as always. There aren't any new easy things to try sadly, it's just the case of continuing to try and 'flipping the coin'. He first said Humira wasn't worth trying but by the end said it would be worth a try but that's all I could do for a month as you can't combine that with TTC. He also suggested a new even more experimental treatment Tacrolimus which would cost around £3,000 and takes a month of trying different levels and regular blood tests before using in a cycle but he didn't sound very convinced in that himself. Then we had an argument about me taking at least two months off. I'm just going to continue with this harvest and fresh transfer cycle for now but I'm feeling more hopeless than ever today which is sad as I had been so hopeful this morning.
I kind of feel bad for saying all that as I don't want to spread hopelessness to others. If it helps he said he hadn't had a case like mine he'd been so stuck on before. Eh!
@VenusStarr is your period still really rough?
How was your meeting @Janefx40 x

@Gardenlady543 I hope your samples have made it?

@Janefx40 oh interesting and I guess probably a bit frustrating that the treatment plan isn't a big change. I guess it's good for a bit of reassurance at least. What did he say at the appt? Hope you're feeling ok covid wise.

@VenusStarr sorry you've been feeling rubbish and tired. I hope it doesn't last.

@StillTrying10000 I'm glad you had the all clear, although I'm sure it feels quite bitter sweet. It's good timing seeing Dr S today. What were his thoughts?

My period finally arrived this morning. Managed to get to gp reception on way to work to book in for blood tests at the local hospital tomorrow before school (had to beg for the 'urgent blood path')

@VenusStarr thanks for the good wishes

Mr S was lovely. I'm going to be taking Humira for my cytokines but annoyingly I can't start until 2 weeks after I get a negative lateral flow! Then I take it for 4 weeks then re-test 2 weeks later then 2 weeks for results. So we are 10-12 weeks away from starting an FET 😬

[quote StillTrying10000]@VenusStarr it was pretty miserable to be honest. He was in a foul mood which didn't help, I think it was the end of a long day for him. He was just saying the same things as always. There aren't any new easy things to try sadly, it's just the case of continuing to try and 'flipping the coin'. He first said Humira wasn't worth trying but by the end said it would be worth a try but that's all I could do for a month as you can't combine that with TTC. He also suggested a new even more experimental treatment Tacrolimus which would cost around £3,000 and takes a month of trying different levels and regular blood tests before using in a cycle but he didn't sound very convinced in that himself. Then we had an argument about me taking at least two months off. I'm just going to continue with this harvest and fresh transfer cycle for now but I'm feeling more hopeless than ever today which is sad as I had been so hopeful this morning.
I kind of feel bad for saying all that as I don't want to spread hopelessness to others. If it helps he said he hadn't had a case like mine he'd been so stuck on before. Eh!
@VenusStarr is your period still really rough?
How was your meeting @Janefx40 x[/quote]
@StillTrying10000 oh I'm so sorry your appointment was so rubbish. He should have been more professional and human with you. There's a certain element of just having to just trust your gut and if you want to do another egg collection and fresh transfer then go for it. Why does he want a 2 month break? So rubbish to have your hopes up for a good appointment, then to come out feeing crap about it all. Big love

@Janefx40 oh that's good that you have a plan. That is long though but if it's necessary, then worth it. Are you allowed to try naturally too?

@StillTrying10000 sorry we cross posted. I'm sorry your appointment was so tricky and helpful. Did Mr S want you to take 2 months off or did that come from you? So frustrating and disappointing.

@seven201 glad your period arrived. Best of luck with the bloods

Xxx

@seven201 I'm glad you managed to get that booked in. Did you go ahead with the fingerprint one too in the end?

@Janefx40 I'm so glad your appointment went well. So funny that he was being lovely with you, I thought he must have been having a bad day but clearly not. It was late when I saw him, maybe he was hangry or tired by his last appointment.

Interesting he suggest Humira for you too. Will be great to see if that works for you and worth the wait. Hopefully you can at least let them know you lateral flow is negative tomorrow ;-) Did you have 1 embryo left or more?

Honestly I cannot understand why he thinks I need two months off, he said something about me not being a robot and my body needs time to recover but couldn't explain to me what it was meant to be recovering from. The only thing I know for sure is i can't get pregnant if I don't try, so not trying for two months sounds like nonsense. And not doing anything for two months will be literal hell for me. But he has the control over the treatment so I guess what he says goes.
My husbands birthday is on Friday and all I can think is last year we spent it at my 12 week scan being given the all clear thinking we could finally relax. So so sad ;-(

Oh @StillTrying10000 I'm sorry it wasn't good today. Its awful when you have that glimmer of hope but you don't get it back. Definitely it's a good thing that your hysteroscopy was clear this morning. I think your plan of going into a fresh cycle is a good one. You're taking some control.
I've heard of Tacrolimus but jeez, it's expensive! I've also heard using low dose naltrexone (sp?) but I don't think he uses that.
I know you probably feel disheartened but I'm holding hope for you ❤️ I just keep holding onto what Jane said about doing the same approach and it can work, even if you don't change anything. Big hugs x

So you were right about Humira @Janefx40! I'm sorry you've got a long wait now though. No hydroxychloroquine? I think this time will pass quickly, I feel like time is flying at the moment.

My period is a bit better today thank you, still sore but the bleeding is easing, I usually only have 3 day cycles anyway but this one's definitely heavier and more painful.

Glad af is here and you've got your bloods sorted @seven201 :)

Sorry @StillTrying10000 I meant to write "sorry your appointment was so tricky and UNhelpful".

I'm freaking out here. I've been bleeding bright red all day but it doesn't feel quite like my normal period (no gloop just blood) and now I'm feeling dizzy so I took a pregnancy test and got a faint positive (there's no chance I'm newly pregnant). It's 30 days since my last Hcg which was dropping. There's no chance this could have carried on and been ectopic is there?

@Janefx40 when you say there's no way you'd be pregnant, what's the reason, I think you said you can't conceive naturally but I don't think you said how you knew. Could you get a hcg blood test?

@Janefx40 Oww that does sound very odd, well done for thinking to test. Are you in any pain? Sounds like you should defo get a scan to check it out just encase. Can you ring 111 and get booked in for one? Xx

@Janefx40 I think you should go to a&e if you're feeling dizzy with the symptoms. We have a rule in medicine: all women are pregnant until proven otherwise, all pregnancies are ectopic until proven otherwise.

@StillTrying10000 tacrolimus is used in kidney transplant patients, so a strong immunosuppressant.

My bloods got to the lab yesterday afternoon, so 2.5 days days after they were taken. Hopefully they will be able to process them.