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Conception

When's the best time to get pregnant? Use our interactive ovulation calculator to work out when you're most fertile and most likely to conceive.

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Original poster

RESPONSE trial thread

984 replies

Marchgirl · 04/05/2015 19:50

For anyone who had joined or is thinking of joining the RESPONSE medical trial for recurrent miscarriage

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17
clairemorgan81 · 12/05/2015 19:48

so sorry joy I didn't know you were going today......was this your 6 week one? sending you lots of love x

clairemorgan81 · 12/05/2015 19:58

sorry just re read and seen it was your 6 wk one joy x

Original poster
Marchgirl · 12/05/2015 20:09

So sorry to hear that you're going through this again joy Sad. Life is just so shit sometimes. Hope you have lots of support IRL Flowers

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girliesaints · 12/05/2015 20:49

Joy, sorry to hear it wasn't better news. What time are you at the EPU tomorrow? I'm there at 10.30am.

Louise, hope the bleeding has settled down.

No more bleeding here but not that hopeful as symptoms have disappeared over last few days. Consoling myself with pizza tonight

LouiseM1987 · 12/05/2015 21:19

Are you at the same hospital joy and girlie ?

Good luck tomorrow girlie I hope everything will go ok and it'll be good news for you !

Do we have any new positives ? Claire ? Xx

clairemorgan81 · 13/05/2015 06:53

morning ladies
best of luck today girlie I really hope you get good news. do let us know how you get onn

joy hoping today goes as well as possible. thinking of you both..

sorry no positive news here. bfn again I think I'm def out this month. I'm beginning to wonder if this trial is for me. the pregnancy testing so early is just making me depressed. I can't help but feel like my whole month is consumed with this.

Louise how's things? your appt still Friday?

any other appts this week?x

LouiseM1987 · 13/05/2015 06:59

Girlie and joy good luck today I really hope it's good news ! I'll be thinking of you both please let us know when you can

Ah Claire I'm sorry you got a bfn I have a good feeling when you do get a bfp it will be a little rainbow keeper. Stay strong . When are is af due?
Xx

Original poster
Marchgirl · 13/05/2015 07:05

Sorry about bfn claire. I'm the same, but not expecting a positive on those tests til at least 12dpo because they aren't very sensitive. (I'm only 9dpo today and never had a bfp before 11dpo). There's still time for you but totally understand that stress getting to you.

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clairemorgan81 · 13/05/2015 07:13

Louise af is due Sun or Mon I think.
I'm 10dpo. ive never tested before af before and at least then you have a pretty certain answer one way or another. this testing so early is so draining and cos it's fmu it sets me up feeling rubbish for the day. I know the reasons for testing so early and I'm sure when a bfp turns up its more than worth it. I'm really sorry I'm moaning. I know you other ladies are having a far worse time x

philippa88 · 13/05/2015 07:23

Morning ladies, this thread has been busy indeed!!

Good luck today girlie and joy I hope you get better results today. It's never going to be easy for us so all we can do is hope and pray.

Claire I know how you feel, I was due to test this morning but I've not bothered, I don't plan to until Saturday/Sunday morning. I know I'm supposed to but I just think it's way too early - especially with clearblue 50mui tests. Like you said, it can set you're day off with a bad start and that's not good. Why not hold off a couple of days? If there's a little bean in there, it will make itself known. Just my opinion but to prevent all the heartache, I'm not testing just yet.

So have we established whether we get the NK cells tests after the trial if unsuccessful? We looked at getting that test, but our head of gyno told us that even if the test showed an abnormality, then the medication they use is not proven to work. We opted out and partly it was due to the fact we'd have to travel down South and pay through the nose, like someone else said, you get the feeling of 'where does it end?'.

Hope everyone's doing well, hugs for those in need x

Choccywoccydodah · 13/05/2015 07:29

Claire I think it's pretty bad they gave us those shirty tests as they're not very sensitive at all!! We should've been given 10miu!
My hcg has always shown early, so I was pretty surprised when it still did on these, but even so, the whole point is to catch it as early as possible.

What hcg are the new CB ones?

Louise, sweetheart, I'm so sorry you're having bleeding too, :( I would phone L or D as soon as you can as I'm sure they'll say phone epu. I have the number if you want me to pm you (speed dial!!!) Or tbh I would prob just ring epu. I hope it settles a bit.

Joy, sorry your scan didn't go as planned. It's not been a great week scan wise, and everyone has been so positive with the bfps but now been shot back down to earth. It's just so unfair :(

Girlie, glad the bleeding stopped and I hope you get some fabulous news today, everyone needs it xx

Choccywoccydodah · 13/05/2015 07:31

Philippa, I think it's only if you're trialled at Coventry, re nk but don't quote me on it, you may be able to self refer x

philippa88 · 13/05/2015 07:33

Thanks choccy, I had a feeling it might have been a local thing. Oh well, hopefully I won't need it! It's fab for those in that area though, stupid Newcastle! X

clairemorgan81 · 13/05/2015 07:39

I have been thinking about getting the testing done but seems nowhere near us does it philippa so would mean travelling. so yes shitty newcastle!! I so agree with you on the early testing, so good for you holding off x

Joy2713 · 13/05/2015 08:27

Good luck today girlie! Fingers crossed for you. Im not in today until 2pm x

girliesaints · 13/05/2015 08:38

Sorry to hear bfn this morning. Didn't get my bfp until day AF was due, so pretty late. If I was to do the trial again I wouldn't test as early, as it made it all very stressful.

Testing at Coventry is properly our next step if this doesn't work out as its only a few hour drive from me. I draw the line at full fertility testing as we have dd.

Treading going in this morning. Will let you know the outcome either way, although really not hopeful. Much appreciate the comments x

girliesaints · 13/05/2015 08:39

Oh and hope everything goes ok at 2pm. J is certainly going to be busy with us today x

Original poster
Marchgirl · 13/05/2015 08:48

I was actually going to suggest holding off testing next month if it's getting you down claire. It's not like they are policing it.Hmm. Maybe that would make it a bit less stressful.

The scratch/ steroid / heparin / progesterone treatment that Coventry offer is still largely untested from the point of view of being officially recognised (no official double blind trials yet), but from their own small scale research that was a sort of scoping trial, they had a 60% success rate in the medicated group, compared to 40% in the placebo group. For me, that's a pretty worthwhile increase in odds.

Totally understand not wanting to spend a fortune. This was absolutely a last resort for me. We just can't afford the crazy prices of all the immune stuff, for example. But i knew Coventry was a one off payment of 360 and also felt like it was a bit more worthwhile as it was funding research rather that lining pockets!

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clairemorgan81 · 13/05/2015 08:54

I think if I continue I would definitely hold off testing next month March as its seriously getting to me.
I'm interested in testing is it only coventry do you know that I can go to? also say results were higher that normal would I have to have my consultant prescribe me what I need? if so that might be a problem and also is it one trip or more? Sorry you might not know answers!!x

philippa88 · 13/05/2015 08:58

I thinking delaying testing might be an option for you, there's nothing worse than a depressing start to the day :(

The odds are quote good for the testing, it sounds like it's worth a try :)
I was also told that once you've paid for the first test, if it doesn't work and they don't get enough of a sample, then you have to pay the full price again for them to repeat the test! I'd check all prices before going ahead, sounds like it could all be a bit too pricey for us - then the travelling involved too. I wish other areas did the tests, I wonder why they don't?! X

clairemorgan81 · 13/05/2015 09:05

I can't believe nowhere nearer us does it. it's pretty unfair that your postcode determines these things. my consultant is dead set that progesterone etc isn't proven but loads of people are prescribed it same with baby aspirin. I just hear so much conflicting info so don't know whats worth doing!x

Original poster
Marchgirl · 13/05/2015 09:50

The one off fee of 360 covers the initial consultation (which is with one of the two professors), the biopsy (also called the scratch), which also improves your lining for 3 months, the testing and results and a phone consult. Not sure about paying again if they didn't get enough. Not heard of that happening but can't say for sure. You only have to go once, although if it took you a while to get pregnant they might suggest another scratch to improve the lining again.
Another place that does it is apparently Thornbury hospital in Sheffield. I think it's private rather than a research hospital but they test for uNK as well, so same sort of thing

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clairemorgan81 · 13/05/2015 09:55

thanks for your info March.....my main worry is what happens if testing proves there's a problem how would i get treatment?
how did you consultation go last night?x

Original poster
Marchgirl · 13/05/2015 10:54

It went well thanks. Definitely following the Coventry protocol next time now, so arranged to speak to the trial nurse tomorrow. I'm hoping they'll keep me on the books in case the worst happens again on the pred etc, so that I could give response a try.
My consultant has agreed to prescribe heparin if that's what cov recommend (after a bit of a battle). She refuses to prescribe pred, but she said my gp might, so I'll take my treatment plan letter from Coventry to them and hope for the best. If not, cov will write me a private prescription, but I'd rather not have to do that

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clairemorgan81 · 13/05/2015 11:17

pleased you know your plan hope your feeling better about it all March. I really hope this works for you x