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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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Original poster
Marchgirl · 11/05/2015 20:54

Coventry prescribe progesterone from 7dpo and heparin from location scan for everyone, even with normal nk results. If you don't get bfp within 3 months then they suggest only taking it from bfp, as it might be causing you to be too selective.
Most rmc consultants that I've heard of only prescribe from bfp and many of them don't believe it will actually do anything (mine included), it's really just because they want you to make you feel better I think, because it's still unproven. Unfortunately the recent PROMISE trial only tested progesterone from bfp as far as I know, so even when they do publish (currently 6 months late), it's not going to answer the question of whether it helps when taken from 7dpo. Coventry have done a sort of pilot trial to see if their protocol could be trialled officially. I think the result was that they should to a trial but not sure what's happening now. Maybe they have to wait for the authorisation stuff? I will ask tomorrow.
Sorry for taking over the thread. More discussion on rmc board if anyone wants to join us over there. www.mumsnet.com/Talk/miscarriage/2376417-Recurrent-Miscarriage-Support-Thread-23-tests-treatment-trying-again?pg=2&order=

OP posts:
LouiseM1987 · 11/05/2015 20:27

March that explanation made perfect sense thank you x

clairemorgan81 · 11/05/2015 20:13

so you know how you say Coventry use it from 7dpo- for who? if you have low progesterone or something? I questioned it with my consultant and she said there is no evidence to support it so i guess here in Northumberland it isn't used. why do all hospitals do different things! sorry about all the questions. you explained it really well March x

Original poster
Marchgirl · 11/05/2015 20:02

Yes, had to pay kaz, but only 360 quid which of course now seems well worth it! It's self funded nhs, so is a research program that is funded by patients, but it's not for profit.

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Original poster
Marchgirl · 11/05/2015 20:00

Officially It's still an untested treatment (and she seems to be very sceptical of cutting edge research). She said steroids are very strong drugs and she wouldn't be happy to prescribe them, but suggested my gp might! Thankfully she had eventually agreed to prescribe Heparin, as gp can't prescribe that.

A lot of people are prescribed progesterone as a 'just in case' from bfp to support the pregnancy. It's quite controversial whether it helps. Coventry uses it from 7dpo to prepare the lining of the uterus. They think by bfp it's too late. If the lining is not properly prepared, then the endometrial cells can age too quickly, and can mean that substandard eggs are accepted when they should be rejected, or that the interface between the egg and lining doesn't form properly during implantation, leading to problems with a perfectly healthy egg being attacked or problems with the placenta, meaning it can fail when it starts to take over as it's not strong enough to cope with the blood flow.
Sorry if you weren't really wanting that much info! Helps me understand it by explaining it to other people. Hope I've got all that right

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Kazz2112 · 11/05/2015 19:58

Oh my god why do we all have to go through all this complicatedness (not a word I know but it should be!). Fingers crossed March that once you speak to the people in the know your solution will be just around the corner.

How did you get that test done? Did you have to pay for it privately?

LouiseM1987 · 11/05/2015 19:41

Why has the consultant refused if that's part of the treatment for nk cells ?

LouiseM1987 · 11/05/2015 19:40

What does progesterone help with ? Sorry I've heard it a lot but Google doesn't really explain. Does it make your ovaries more selective with the eggs ? X

Original poster
Marchgirl · 11/05/2015 19:34

I should have started progesterone today claire, but thought I'd hold off until consult just in case they advise something else. I would start steroids as soon as i get bfp but have to persuade the gp to prescribe it first, as consultant has refused. Heparin will start after a location scan at 5 to 6 weeks.
Hopefully in the future they will do nk cells testing as standard and maybe nt100 will be a treatment alongside steroids. If so, all you ladies will have contributed to that advancement. Smile

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clairemorgan81 · 11/05/2015 19:23

I was getting confused March as I knew the response drug was for the same thing, totally forget you only have a 50% chance and may get placebo doh!
Its unexpected news but I would think of it as positive as they now have a reason for your losses and there is treatment whereas were taking a shot in the dark that it's that reason were losing and then another risk we may not get the drug......does that make any sense?
you 'll find out all the info tomorrow - good luck keep us posted.
oh what happens if bfp this month? surely you would start on steroid staight away?x

Original poster
Marchgirl · 11/05/2015 19:18

uNK is testing for levels of uterine natural killer cells by way of a uterine biopsy. More than 5% levels are an indicator that your body has a faulty immune response to a pregnancy (so it attacks the foetus, thinking it's an invader).
I am glad to have a diagnosis and potential treatment (albeit not proven by a clinical trial yet, just by empirical evidence from Coventry's study). I think it's just going to take me a bit of time to get my head round, and I'm still worried it won't work, as there is a girl on the rmc board who still mc'd at 9 weeks on the steroid treatment.
I'll be gutted to leave the response trial as they've been so lovely, but even though their drug is also an immune regulator, I can't risk being on the placebo now I have a diagnosis, I don't think. Will talk to the prof some more about it tomorrow evening at my phone consult.
I might hang around for a bit longer on this board if you guys don't mind. It would be nice to hear what happens to you all x

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Kazz2112 · 11/05/2015 18:49

Wow people have been busy today! Glad to hear the bleeding has stopped Girlie! Nor long to hang in there for the good news I so hope you and Louise will both get this week. Sending lots of positive happy thoughts your way!

Feeling a little bit more upbeat today which is good! Although that may be because I'm so stressed out I don't have time to think! To make matters worse - DH's family have text to ask if it's ok for them to come and stay for three days for the weekend I'm expecting my smilies!!!!! Grrrrrrr!!!! Really helps having people to talk to who really do understand! I'm sure you can appreciate this frustration!!!

March - what are the unk tests? Great news that there may well be a simple treatable solution! Fingers crossed!!!

girliesaints · 11/05/2015 18:07

10.30 on wed. It's at the EPU clinic rather than where the rest of the scans for the trial normally are but the Response team are also attending. Hope Louise you're getting similar support.

No pressure ttc ladies, could do with a couple of bfps in the next few days to get back the positivity on here ??

LouiseM1987 · 11/05/2015 17:47

What times your scan on Wednesday ?
It's eased up but keeps coming back regularly :( I'm liking the ostrich approach but then the pain hits and I'm all a mess again ! X

girliesaints · 11/05/2015 17:44

Forgot to ask Louise, how's the pains?

girliesaints · 11/05/2015 17:43

Not taking anything from the bleeding at this stage as can easily start again. Think I'll resume my ostrich in the sand approach, rather than the startled bunny look of today! Scan Wed Am, so not that long to wait.

LouiseM1987 · 11/05/2015 17:32

Good news choccy I called L this afternoon :)

March that's good news then isn't it ? Will prof quenby be calling you then ? I no the test you pay for but treatment is on the nhs isn't it ?
Girlie that's good ?? I've got everything crossed for you ! Xx

clairemorgan81 · 11/05/2015 17:31

pleased to hear all ok today choccy.

pleased bleeding has stopped girlie, that's a good sign. what time is scan on Wed?

trial nurse called me I have to go in next Mon as its been 3 months since I started trial so need more bloods taken and to get more supplies.xSad

girliesaints · 11/05/2015 17:28

Gen, generally you'll get your results at the next appointment but if there's an issue your trial normally call you prior to the appointment particularly if it's something impact participation in the trial.

Dare I say it, (whispering) bleeding has stopped. With last MC once it started it didn't stop, so who knows what's going on in my tummy.

girliesaints · 11/05/2015 17:13

Glad to hear good news Choccy.

March, sorry to hear the unk results but looking at the positive at least you have an potential answer and therefore a treatment plan. When are you having your telephone consultation?

Genwah85 · 11/05/2015 16:57

March I hope that means they can treat you and hopefully have no problems conceiving and staying pregnant next time?

When should I expect the blood results from start of trial? I had them done last week and I just want to know if I have any other problems that could causing the miscarriages?

Thanks

clairemorgan81 · 11/05/2015 16:15

March does that mean that you can prevent a future loss though March?x

Original poster
Marchgirl · 11/05/2015 16:05

Arrrgh. Just had my results back from the uNK cells testing I had done at Coventry last month and they are abnormal. 7.9 when they should be below 5. I think this probably means I'll have to take steroids (which means I won't be able to continue with the trial). Totally reeling. Not least because maybe I could have prevented the last mc. Got a phone consult tomorrow with the prof so will know more then.

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Choccywoccydodah · 11/05/2015 13:33

Appt went well thank you :)
Heard HB (144bpm) sounded like a train. Train meant to be boy but ds sounded like a horse so I'm not making assumptions lol!

Spoke to L about you Louise as I said you were worried. She said to call her if you haven't already. d wasn't in today and they didn't seem too busy.

I hope these days pass quickly for you both. How's the spotting girlie? Xx

girliesaints · 11/05/2015 13:05

Thanks ladies, means a lot.

Choccy, on a better note how did the appointment go?

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