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

No stock of humira at the Wimbledon place until later in the week so I'm sat in pret being a bit teary. It's just a bit overwhelming as I have no clue what any of it means. I will get googling when I'm home. I did ask if it's all treatable and he said yes.

Just found a phase 2 treatment plan and it has hydroxychloroquine (not sure what that is yet), prednisolone (I'm pretty sure that's steroids), intralipids (an immune thing I think), omeprazole (my dd took that for reflux).

He asked if I wanted to do super ovulation and I said no but maybe I should say yes as my periods are less regular these day. On cd20 and I don't think I've ovulated yet.

Writing this is helping me calm down a bit. I'd been ok for a long time so this has been a bit of a shock to the system.

@VenusStarr good luck for your appt

Oh @seven201 I've been thinking of you 💜 it's very overwhelming. I'm sorry you're teary. We're a bit early but getting a coffee first (due in at 2.30). The second phase of your plan is the same as mine. Will you need a retest of your cytokines to check the humira has worked? Xx

Thank you for your messages @Janefx40 @Gardenlady543 I'll reply properly later x

@Gardenlady543 that's so complicated! I'm glad you've got a specialist appointment. I hope they can help.

@seven201 that's great you have a plan of action. Hydroxychloroquine was what I took for NK cells and managed to get successfully into my second trimester so I'm a big champion of that. And it has no side affects.
The omeprazole is to stop the prednisolone (yes steroids) burning your tummy.
Are you near the clinic as if so it would certainly increase your chances if you do superovulation and also you'll be given two exact days to have sex on. I found that a relief in itself after months of trying you just aren't in the mood to be doing it loads to try to catch ovulation. Clearly it's more expensive that natural cycles as you have to pay for the scan to check when to trigger ovulation but if it gets your pregnant quicker you'll save on the cost of intralipids £380 etc. Well done for getting through that by yourself, it's so much info to absorb quickly it's really tough xx

@StillTrying10000 thank you. That's reassuring! I think it is just a lot to take in and he's not one for explaining things much or just general reassurance. I think I just need to do a few hours research tonight and then will feel calmer. It's about an hour to the clinic from where I live/work. Did you do that then? Roughly how many appointments? It's the stress of time off from teaching that puts me off, but maybe it would be better. Don't suppose you know if they do later afternoon appts or weekend ones? It's that kind of stuff that makes a difference.

@VenusStarr thank you. I hope your appointment went well?

I popped in my local pharmacy to ask about humira and they say only hospitals can dispense it, so that narrows things down. I was keen to take it asap but I think in reality I might need to go on Thursday after work to Wimbledon for a very long drive!

@seven201 sorry you felt overwhelmed. Your protocol is similar to mine tho I'm not taking hydroxy. I'll save you some time on the Humira. Pharmacies CAN dispense so that's rubbish but not all have access to it and those that do are expensive. I contacted everyone that was mentioned on the FB thread and they were all £500-£600 per injection so just get ready for a trip to Wimbledon but call the day before to check stocks. They are open until 8pm I think.

[quote Janefx40]@seven201 sorry you felt overwhelmed. Your protocol is similar to mine tho I'm not taking hydroxy. I'll save you some time on the Humira. Pharmacies CAN dispense so that's rubbish but not all have access to it and those that do are expensive. I contacted everyone that was mentioned on the FB thread and they were all £500-£600 per injection so just get ready for a trip to Wimbledon but call the day before to check stocks. They are open until 8pm I think.

[/quote]
@Janefx40 Thank you. That is useful! I was all set to go from epsom but I rang the Wimbledon one and she'd just ran out. She's going to call me when it arrives though.

@seven201 yes I did 4 or 5 rounds of superovulation. You just need one ultrasound scan around day 9 of your cycle but you can combine that with your intralipid appointment which it sounds like you'll need anyway. They aren't great for flexibility hours, they certainly don't do weekends but some days they do earlier or later, latest I've done is 5-6pm, I guess you can only ask.
I had the same issue with the GSCF prescription, I found Lloyds Pharmacies are the best and cheapest as they buy direct. x

@StillTrying10000 that is really helpful, thank you. I think I might as well do it if I've got to go there anyway!

Hi everyone. What a day.

@StillTrying10000 congrats on being pupo ❤️

@Gardenlady543 that's so strange about your tsh going down so much after a week on meds. I can imagine your head is scrambled. I hope the appointment next week goes well and you get some clarity and support.

Our appointment was ok. He was Not Happy about the sitagliptin and asked why I was doing the trial, I explained I wasn't but Tommy's prescribed it on the basis of my history. He wants me on gcsf but said I can't do both as it's too much. But then said he's putting me on metformin 🤔
It's all abit of a whirlwind and I felt very overwhelmed and stressed.
We went and sat in Weatherspoons to chat before we drive home. So the plan is I continue with the sitagliptin, start metformin and plan a transfer for May. So I'll get in touch with the ivf clinic to get the ball rolling on that.
If it ends in a failed implantation or another mc, my dh will do the sperm dna fragmentation (no point now as we still have the one embryo), I'll do the gcsf and we'll embryo bank - but he said not to pgs test them.

We also said if we're lucky to get pregnant and have a live baby, it will be an only as we just can't keep doing this.

But just to add some extra stress, I'm still monitoring my bbt and it's shot up to 36.91 this morning at 9dpo. Never been that high before, even on cyclogest (am on no meds), usually post ovulation temps for me are 36.6ish. So I'm going to test on Wednesday just to be sure. I highly doubt it.
Anyway, I've just emailed the clinic our plans. He did say he's confident we'll get there, I just need to right combination of meds. My notes are covered in stickers 😕

Hope you're all OK. My dh's party went really well ❤️
@Janefx40 happy birthday! @seven201 hope you're feeling OK about things now xx

@VenusStarr well done. I like the sound of your plan. Sounds very pragmatic to me. Tommy's wouldn't prescribe it if they didn't think it might help. I'm glad your dh's party went well!

@VenusStarr I hope looking back you feel relieved to have told Me S about the Sitagliptin. Maybe he wasn't happy but he's still treating you so now you don't need to worry about it.

It sounds like a hard chat you had with your DH but we have to go through these conversations. Having a single child has a lot of advantages. It's probably the position we are now in. Although our family doesn't look how I imagined, there's no doubt that it's much easier and less stressful with one! For now tho, we need to focus on getting you that one!

I've never temped so am no help there I'm afraid.

Glad the surprise party went well.

@VenusStarr btw there could be advantages to doing the sperm frag test now. The downside is the price which is painful! But it takes 3 months to improve sperm fragmentation depending on the cause so if there was a problem then that would further delay you. Sorry to throw a spanner in the works but just a thought x

Thank you @Janefx40 I am glad I told him, better to be honest. I got the follow up letter today and it's actually really nice. I guess he was just a bit shocked. He was clear that there's no published evidence on sitagliptin. But then none of the meds I'm on are approved for use in pregnancy.
I emailed the nurses last night to advise on what we want to do and got a nice email back. So I wonder if some of my anxiety is my own reflections on not being a 'good patient', if that makes sense.

Also, feeling really like I'm a very complex patient.

I forgot to say, dh was upset when we left because there are 2 staff members visibly pregnant and he just felt like it was a bit insensitive. First time I've seen him have a response like that. It's usually me who notices.

I don't think I am pregnant, I probably shouldn't temp, but I like to have an idea of when my period is coming.

Starting metformin tonight, dreading the side effects. Is anyone else on it?

Ps, thank you Jane re the sperm dna tests... I think dh doesn't feel its necessary at all. So that was our compromise. Will have a ponder xx

@VenusStarr well done on telling him and sorting out an action plan.
It's weird seeing them with bumps. They are great nurses and shouldn't have to stop doing their jobs but my wedding was the same week as Laura's last May so I did feel a bit jealous she's fallen pregnant so quickly after her big day and I've been visiting the clinic for much longer than that.
Interesting they said not to PGT test to you as that was suggested to me. I sort of feel you may as well test them if you are freezing any as it's cheaper to test (£600 each) than pay all the money for a frozen transfer only for it to fail for genetic reasons when we're on such pricey drugs. I know it's a real moral decision for some people though. x

@VenusStarr I'm on metformin too, for polycystic ovaries. I'm on 1.5g (have been for a few years) but Mr S wants me to go on 3g! It did take my body a few weeks to get used to it. I think I had an upset stomach. Mr S was meant to write the new dose in my letter so I can ask my gp to prescribe, but it's not in there (have emailed). I'm using that as an excuse to not up my dose yet! I would definitely start on a lower dose and build up.

I think we are all hyper aware of what happens in our appointments, but for the staff it's very routine.

Tonight I have spent 3 hours on a round trip to pick up humira. Then I got home and started to read the list of side effects (longest list I've ever seen, including common for skin cancer), then gave up on reading those and just did it anyway. How is everyone else doing?

@seven201 thanks for reminding me. Just realised I forgot to take the Humira! Was going to take it today!! Maybe I'll take it tomorrow if I get time!

[quote Janefx40]@seven201 thanks for reminding me. Just realised I forgot to take the Humira! Was going to take it today!! Maybe I'll take it tomorrow if I get time![/quote]
Why so busy at the moment? Silly question as you won't have time to answer .

@seven201 ha! Too much work plus am a bit involved in organising bits for refugees/fundraising so that's been busy. Can't believe I forgot tho! How was it?

[quote Janefx40]@seven201 ha! Too much work plus am a bit involved in organising bits for refugees/fundraising so that's been busy. Can't believe I forgot tho! How was it?[/quote]
That is busy! That's great you're healing with some refugee stuff. It was fine thanks

Glad your injection went OK @seven201 do you have to do 2 humira injections?

@Janefx40 how are you getting on, did you do your injection today?

@Gardenlady543 how are you getting on?

@StillTrying10000 I hope you're getting on OK. When is your Otd?

I've started spotting this evening, so my period will be here tomorrow, so I did ovulate at my usual time. I've booked in with our ivf doctor next week to get the ball rolling. I'm absolutely petrified, it's coming round really quickly.

@VenusStarr gosh it must be so tough. So much pressure. Have the metaform symptoms calmed down?

I'm 5DPT today and had a feint but definite positive this morning so now it's just a sickening wait to see if it sticks over the next few days. x

Oh wow @StillTrying10000 gentle congratulations ❤️ I hope this is the one 🙏

I've had a bit of an upset tummy today 😕 but not terrible. Think I'll see how I am in a week and add in another tablet x