RESPONSE Trial for Recurrent Miscarriage - Thread 4

[Vicki272]

Thread for all ladies on the RESPONSE trial - all stages welcome, for a bit of well needed silliness and good old fashioned all round advice and support!

Hi ladies

So glad to see so many ladies doing so well, I enrolled on the trial at the end of last year and am over 30 weeks pregnant after 4 early losses . I've been reading the threads occasionally but never got around to registering.

Kazz - I'm so sorry for your loss x

Vicki - I also bled early on including a clot, hoping everything works out for you.

Size - I'm the same, I'm still worrying now, even though I know how lucky I am. I think I can't believe it really.

Claire - I'm really hoping it happens for you soon.

RE: Aspirin, here's the list of excluded medication from the trial information email I got from the hospital when I enrolled:

"Are there any excluded medicines during this study?

Medicines that are excluded from the time you sign consent through to your visit 4 weeks after finishing study drug are as follows:

• Progesterone

• Low molecular weight heparin (a blood thinner given by injection)

• Medicines that affect your immune system, such as steroid pills or injections

o Steroids that are inhaled or squirted into the nose are not excluded

• Lithium (beginning within 1 month prior to consent)

• Medications known to have harmful effects in pregnancy, unless needed for a medical condition

• Any other experimental therapies

The use of some of these medicines (such as lithium and experimental therapies) is excluded because it may be unsafe to take the medicines with NT100."

Wishing you all lots of luck x

vicki, the first few weeks are so hard, esp when you've had the bleeding. Time really drags. But it does start to trundle on, and in a few weeks you'll look back and go: Wow, how did i get to 6 weeks already? The positive hpts are a really good sign so fingers crossed there is no more bleeding and you can breathe a little bit. Keep yourself distracted as much as possible. We've had loads of visitors in the last few weeks and it's mine and my dd's birthday today and all the distraction has really helped time pass.

size, whoa. Breathe, you poor thing. sorry you had a crappy experience with the student midwife. Sounds like she's saying what you'd say to someone the first time you raised that with them when they didn't know your history, so whilst it may have been the right thing for her to say, i absolutely agree that your midwife should have stepped in. When do you next see her? Could you arrange another appt? I'd call her tomorrow about the scan anyway. On the measuring big thing, i know you will of course worry about this as another thing, but there are lots of reasons you may be measuring big. Are you swollen at all? I retained masses of water with dd and was blown up like a balloon, and consequently measured big, but it was all fine, i was borderline for too much amniotic fluid, but surely that's better than too little. Glad they are scanning you as a precaution. Re the possibility of gd. Unfortunately it has nothing to do with your weight or diet. Some people just get it and others don't. Someone on the rmc board had it and managed to control it very successfully with a low GI diet, so its not insurmountable, but i would also say that i know this test can be affected by having something sweet just before, so you might find its normal next time. Hard not to worry but it's all normal worries that everyone has, just magnified by what you've been through, so don't give yourself a hard time xxx

Hi star, gosh you'll be the first to have uour baby on this thread. When are you due?
Thanks march, it was just all a bit of a shock. W get so much care in the early stages that in these later weejs I've felt pretty abandoned. I've not even discussed any sort of birth plan and I'm worried I'll go into labour early so that's yet another worry. Anyway, one worry at a time!
I don't think I'm seollen. My hands and feet are fine. I'm militant at drinking water so I'm always well hydrated but don't feel like I'm bloated or retaining extra.
I did just have a thought that as my placenta is at the front, maybe that is creating more bulk and making me measure big? But the midwife knows that so I would've thought she'd take that into account.
I'd be gutted if I do have GI as I've been so careful with my diet. But I do have a sweet snack a day after dinner as I like it because it makes the baby kick more. Which is otobsbly a bit irresponsible, but I like the reassurance.
I think I'll feel a lot better tomorrow when I know what day / time my scan will be and I'll have the blood test results.
It's just so tiring being so highly strung all the time.
Thank you for putting up with my constant rants.
How are you getting on? How many weeks are you now? Are you getting good support?

Thank you Starlight.

it's been a tough day today as one of my colleagues who has been my rock at work ended up spilling to me that she's 12weeks pregnant. We've been off 5weeks (teachers) and she only found out the day we finished when discussing my woes made her realise she was late! She said she had had sleepless nights worrying how to tell me. we spoke on the phone and both cried. I hate that she felt like that and I'm so grateful she told me before anyone else.

The list of trial drugs is interesting as I dont think aspirin falls anywhere under those headings. It can't be considered a drug that harms pregnancy as it is so regularly prescribed by loads of doctors during pregnancy.

And happy birthday March!

Oh kazz, sorry that is such difficult timing with your colleague. But it's good she approached you and dealt with the subject sensitively.
Bah, sorry march, I overlookex your birthday. Hope you had a lovely one. Did you do anything special?
I'm off to that New York resturant called Tribeca on Bruntsfurkd place on Sunday to celebrate my sisters birthday.

I'd have thought aspirin would come under the 'experimental therapies' as isn't that why some Drs prescribe it because they THINK it might help.

Ah yes. I missed that one

Hey everyone after a bit of advice if you all don't mind,

I had my booking in bloods taken by racheal the lady running the Response trial out of heartlands, well today I have had a letter through from heartlands asking me to go to the anti natel clinic regarding my booking in bloods as they need to do the again, at the bottom of the letter it has 'blood group antibodies' and 'glucose' handwritten on it, I'm guessing I shouldn't go and get them done there as they need to be done by the trial team? I've tried to contact Rachel but she is on annual leave....any ideas??

Thanks all x

Hey genwah, my trial nurse got in touch it's my midwife before my booking appointment to tell her about the trial. I think the only blood test they omit is the full blood count as that shows the White blood cells which are affected by the trial drug, which would blow the double blind secret.
It's routine to check for glucose in blood, as it can be an indicator of gestational diabetes, so you'll get checked throughout your pregnancy for that. And I'm sorry but I don't know about blood group antibodies, may be something g about Rhesus negative test?
I think it all slinds completely standard. But when you go to your appointment do request that you don't get your full blood count done as that's the important one to avoid from my recollection.
Hope all is well.

Hi star welcome and good news on getting so far

How are you feeling size? what a crappy experience with the midwife! have you managed to speak to her since?

kazz what terrible timing, at least she was sensitive about telling you. How are you feeling lovely?

I had a lot better day yesterday with no spotting. Today it has come back a little, finding it tricky to chill out but really need to as it isn't going to help anything (so everyone keeps telling me!!)...

Had a nose bleed this morning, sometimes get them if i have massively stressed myself out etc so that must be telling me to sort myself out somehow. I am still POAS everyday! how sad is that? it is almost a coping mechanism now!!

Really tired today... finding it difficult to get to sleep at night as i am so anxious about everything.

How is everyone? xx

PS. Thanks march and happy birthday!!!!
Hope you've had a great day? xx

I'm good thank you Louise. Had GCSE results day today and whilst the schools results were shockingly bad and a disaster, our results (Science) were easily the best in the school and up 10% on last year so I'm very very chuffed! Told three of my other very close colleagues about my latest mc over lunch and they were so lovely. They don't know about my other colleagues pregnancy yet and she's going to keep it secret when we're all out tomorrow so she can tell our boss first.

I'm thinking of asking her to prewarning me when she tells everyone at work. so everyone can congratulate her properly and I'm not put in an awkward position facing all the happiness as that will hurt. is that harsh?

kazz i don't think that is harsh at all and i am sure that she will understand too... seems she is very sensitive to your feelings so far.

I would just explain what you have said there to be honest.

Congrats on the results !

How you feeling today? x

Kazz it's a sensitive subject but I think it's important that you tell her not to keep her pregnancy quiet. She should feel comfortable in talking to you/being around you as this is her happy news! I know it's hard but imagine if the boot was on the other foot.
My best friend knew about my 4mcs and when she got pregnant, she told me first and didn't make a fuss. As time went on she never mentioned her pregnancy and I felt sad that she had to keep such amazing news quiet around me. I told her to talk about it and I even started asking questions loads myself, in the aim of learning about pregnancy. No point in keeping my head in the sand. Don't get me wrong I did cry on occasion but I just had to man up! Sadly she had a missed mc at her 12 week scan and I supported her through it - to find out I was pregnant! I had to tell her gently but she was happy and yes it hurt, but she was there for me. Sometimes feelings have to go to the side. Now the way I do it - if she asks me about baby, I tell her. But I always let her ask, I don't just bang on about it to her.
It's a tricky one but you have to make sure you don't end up the bitter one. X

Morning, sorry not been on, couldn't bloody get on because of this stupid hacking thing!! Passwords kept kicking me out etc!

Welcome Starlight! Hope your pregnancy has been going well so far. I'm 31 weeks tomorrow, so we're close together, when are you due and I'll add you to the list :)

Size sorry about your appt. like March said the gd is not anything to do with what you have done (if they test and it's positive). I have the skinniest ever friend and she also got it, and you wouldn't have even known she was pregnancy at the time!! and another friend who had a gastric band a few years ago (she was only a size 16 the wally, shrunk to a 10!) and she got it too, and she couldn't eat a lot through her pregnancy anyway.
Re the student, totally understand you didn't want her there. You've gotten used to your mw(s) so to bring a newbie into the mix isn't what your really need when you want to talk about things so sensitive!
I was nervous when I had my appt with a student when I had ds. Thankfully mine was a lot more 'advanced' as it were compared to perhaps the newness of yours, but she was there also when I had ds and she was my rock in hospital so they do have their uses!

Re the aspirin, I just keep getting bounce backs, if you have any queries talk to you team etc, but I've been told by many ladies where I've posted asking about it that it is banned, and MAS yes it comes under 'experimental' remedies like you say.

Gen what size said :)

Vicki so glad the spotting has stopped, fabulous news!!!!!! Do you have you next appt Monday?

March hope you and dd had a great birthday!!

Had my mw appt yesterday, and measuring small (no surprise as was the same with ds). She said she'd be sending me in for a growth scan if I didn't already have one booked for Monday. I don't feel bloody small mind you, I feel a LOT bigger than ds! But measures me smaller than my last appt which is a bit
I've eaten a lot of shit over the last few weeks with being away and ds' birthday so that probably doesn't help things!
Whooping cough jab today, oh the joy!

Shit sorry forgot to add, congrats to your friend Kazz, it must have been really really tough for her to tell you given everything that's happened.
Agree with Philippa re not keeping it quiet. My friends kept things from me and it tipped me over the edge and really really annoyed me even more.
Are you any further with what's going to happen next re your trying again?
Not long til your hols now. How's your bruise?

Ha! The bruise is improving. it's like a work of art with all the colours and thankfully having tried my bikinis on to plan my packing remains coveted by them!!!

I'm sure no friend will understand. I don't want her not to talk about it but I just can't handle the excited congratulations when she makes the initial announcement and I think she'll totally get that.

It's mad how fm feelings differ. I am so happy for her and so grateful for how she's told me. My other closer and more long standing friend I'm struggling to deal with emotionally. she announces her pregnancy at 5+5 on our whatsapp group with no warning. That hurt. I also think I can't be happy for her as she's still not even 10 weeks and I sadly know until what can happen at a scan.

Off out with my work mates for drinks this afternoon. Can't wait.

Sorry I've not been on. Wasn't able to reset my password but finally in now i know that the password rules have changed (the new one wasn't long enough, but it didn't tell me that! )
Anyway. Thank you for the birthday wishes. Dd and I had a nice few days.

Welcome star, nice to see another success story.

I would say aspirin would come under 'experimental treatments' and also possibly under 'medications known to have a harmful effect in pregnancy', if the most recent aspirin study is to be believed.

vicki, glad you had a well deserved day spotting free but sorry it's back a bit. Hopefully you're at the tail end now.

kazz, that's a really hard one. It's great that your friend has been so sensitive. I don't think it's a bad idea for you to ask her to let you know when she's going to tell other people. You're not asking her to keep quiet about the pg (and i think she might appreciate a steer on the fact that you're not asking her to do that), but rather, you're just asking for a heads up so you can prepare yourself, because it's bound to be discussed. I think if you're on the other side is sometimes hard to know what the right amount of chat on the topic is, so just keep talking to her about how you feel and then there will be no misunderstandings. It is possible to be happy for her whilst being sad for you, and that's ok. You don't have to pretend to be all happy all the time. If she's a good friend (and it sounds like she is), then she will understand.
Ps congrats on the GCSE results

size, did you manage to get the scan sorted? Any news on the potential gd issue?

Glad I am not the only one who has had trouble with the password thing! Been driving me nuts!!

Selfish update first then will log in after work to catch up properly...

Since they told me tuesday that they were worried about the pregnancy being ectopic, have been really worried about it! Have rang today as keep getting twinges in my tummy (various places but lots in my right side) these aren't really painful but am now really concerned about it. L&D aren't in so have spoken to Nat. She has said that they might want to look at a scan to see if everything is where it should be on Monday.

She is now looking in to the logistics of it all as the scan would have to be afternoon and my appointment was initially the morning but she doesn't know if there is an impact on the couriers and stuff... she is calling me back to confirm.

If it was ectopic, i would know right? The pain would be severe wouldn't it?

The spotting seems to be okay today... touch wood! I am all in a tizz again and just don't really know what to do with myself.

Normally i am quite a calm and collected person - not that you would know it these last few weeks!!!!!

Any advice? xx

Sorry I missed your post before about possible ectopic Vicki, how scary!! But like you say, I believe you'd be in quite a bit of pain, but I don't know when the pain kicks in iyswim? Bloody love Nat!! Glad she's hopefully sorting you out

choccy i think that is what is worrying me to be honest... like maybe it is ectopic but that it is too early to be really painful...

who knows? hopefully i get some sort of answer soon! would be nice to know what i am dealing with. xx

vicki it sounds really frustrating. So sorry you have to wait til Monday for any further clarity.
kazz it is so tough, but I echo March's advice entirely.
I think I lost a post yesterday as thought I had uodated about the scan - sorry.
My blood test cage back clear of glucose so no need fur further GD testing (I've been getting hungry overnight so think my 4am bowl of cereal may have tipped be over the edge with the urine sample on Wednesday!)
And I got scanned yesterday and my fluid levels are normal and baby is measuring above average, which they sayd is nothing to worry about. He/she is measuring 1week 2 days ahead, but that can easily average out over the next 11 weeks, so I've been told not to worry and just keep an eye on movements.
Only got 7 weeks left at work now, so beginning to get a bit more real every day.
Just bought mysekf one if those colouring in books you've all been enjoying. But to be honest I think I dhoukd be tidying and nesting as there's so much to fo. But of rather zone out and get colouring in!
How often are your growth scans choccy?
They didn't make it clear if I need to be seen again or not.

So glad all was well with the scan and glucose test size. If you ever need someone to chat to irl then pm me (but I won't be offended if you don't want to meet, i know it's not for everyone! )

vicki, i think ectopics usually don't present until 6-8 weeks, but it depends on the growth and where it is. I think a scan would be wise just to make sure, but try not to worry, there are lots of other possible explanations for the bleeding and your hcg rose normally didn't it?

Size so glad all is ok!!!
Re growth scans, mine are every 4 weeks (although this one Monday is only 3 weeks after the last and next one will be 5 weeks as my scan day should bank holiday Monday).
I don't think they are the norm on the trial, and with ds I only had one growth scan.