RESPONSE Trial for recurrent miscarriage: Thread#3

[Marchgirl]

For anyone on the RESPONSE medical trial for recurrent miscarriage, or thinking of joining. Peeps at all stages of the trial welcome!

Link to previous thread is here

I can definitely see both sides Phillipa and kazz - I haven't begun to even think about that side of things. We had the bloods done following each mc and the final ones at the end - have had umpteen internal scans and nothing has come back. One day at a time, one test at a time and all that!

I will be honest i hadn't even heard of the NK testing until I saw it on this thread... I thought we had had all of the tests going - the only one that the NHS made us aware of but that we haven't had is the chromosomal one, i am completely naive when it comes to all of these others!

The whole thing overwhelms me sometimes - i am insanely jealous of those people who can have a normal, naive pregnancy! (I bet that I am not the only one!) There is so much to take in with all the options available i suppose... xx

I do agree that some unscrupulous places are probably out to grab as much money as possible, but i honestly don't think coventry is one of them. It is nhs self funded (the cost covers the cost of their research), and there have been a high number of positive results on the rmc board under their treatment. Although they haven't done a large scale trial yet, a scoping trial showed an increased rate of pregnancy success from 40% without treatment to 60% with treatment, which to me represents a improvement that is worth taking a chance on. Less than 10% of people tested for uNK cells at Coventry are found to have high levels, so the testing is much more stringent than blood nk testing, where i have noticed a large number of people tested show high results (perhaps they are the correct ones, but I prefer the idea of the testing being more stringent so the treatment isn't given potentially unnecessarily)

My nhs consultant is also very sceptical of Coventry and their treatment. She is the 'top' (one of two) rmc consultant in Edinburgh. She doesn't trust it because it's not in the nice guidelines. Rmc is not the only job she does. She is also a consulting gynae on the labour ward. The bottom line is, she doesn't have any interest in complicating her life by following other people's treatment plans that haven't yet gone through rigorous testing. It's easier to just say it won't work and hope the patient goes away.

Unfortunately for us, this mistrust between rmc specialists of anyone else's research In their field seems to be a common feature and imo is inhibiting understanding, as everyone refuses to believe other theories. Coventry are equally sceptical/ scathing of the immunes theories (mr shehata et al), yet people spend absolute fortunes on these treatments, many successfully.

I think everyone needs to do their own research and decide how far they go. For me, Coventry was a last resort and it turned out to have an answer for me. If this pg fails on treatment then i really don't know where that leaves me, but at least I've tried coventry.

You're right, everyone has to follow the path they think is right for them. We all seem to get told various different things in different areas and it makes you wonder if anyone has a clue at all!!
Vicki the NK test is private - hence not on the nhs. Like someone mentioned before, it's not in the 'NICE' guidelines so they nhs don't entertain it.
I wonder if luck has a lot to do with it - maybe like the trial in terms of placebo or drug. I can't wait to find out what I've had!!! Xx

Phillipa I was wondering this earlier and never thought to ask in any of my appoitment but at the end of trial do we find out which one we had? X

I think you do find out at the very end gen, but not before its completely finished

Yeah I think it's next year when we find out, once all the results etc are in. Be so interesting to know! X

I enquired about that. Apparently we don't ever find out (assuming I get on). That was the answer I expected from my understanding of medical trials from my degree but was still disappointed

Hi all, can someone please fill me in on what this trial involves. Can't seem to find any info and having lost 4 I'd be keen join it.

Re the nk test of any of you do have it, make sure it's not the blood test!! You can have it in your blood but not necessarily in your uterine lining therefore be put on the wrong protocol. As far as I'm aware only prof Quenby in cov does the nk uterine test. As it's still in testing stages it's not supported by the nhs, but as soon as it's come out of testing stages, the nhs will fund it (much like this trial).

Re ov tests, you're meant to go from your first smiley when it comes to testing from the trial.
You're meant to throw the holder away when you test for the following month as I said up thread somewhere you can get a false reading. The holder remembers your last test, so if you got a smiley last month and use it this month, you may have got a smiley, but because your lh may be slightly lower, it'll show a blank. You need to use a new one every month, just get them off the hospital.

Re testing I was early at 5dpo but I've always been early getting positives and caught first month.

Bit of a shit day here. Today is the first anniversary of my first lost baby's due date, so should be celebrating a 1st birthday around now :(

I was told re finding out it'll probably be up to 2 years. Once they've gathered all the results etc from the trial and gone through everyone and everyone has had their babies etc, but we can most certainly find out x

Fackinell so sorry about your losses

more info here

Hi ladies just to update...I had my 6week scan this morning & we saw a sac with a teeny tiny baby inside with the heart beating away everything measured correctly.
My symptoms returned yesterday afternoon & are now even stronger...I must have just been given a little break yesterday morning.
X

Thank you.

Eeeeeek brummie!!!! Massive congrats!! Can we see a piccy? Xx

Crap,I'm too old.

Congratulations brummie, lovely news x

Brilliant news brummie! Bet that's a relief! :) xx

Hi fackinell, waves from the rmc board. They are just about to close this phase but the next phase will be starting soon after. Someone said that the criteria might be a little more open in the next phase, so it's worth keeping an eye out for that, in case you are eligible under the new criteria

fan news brummie so.pleased for you x

Thank you Marchgirl. I will do

Congratulations Brummie!!

Congrats Brummie! wow this is a good day for you Brummies! The other Brummie on the rmc thread also had a good scan today at 12weeks! Hope these good scans keep coming!

Oh brummie, that's fab. What a relief that you little pickle has put in an appearance xx It's quite hard to actually let it sink in.

Well, we had our 20 week scan today. The one where they measure everything, look at heart, kidneys, brain, spine etc etc.
Very pleased to report everything is where it should be, so relieved it's unreal.

The only slight hiccup is I have a low lying placenta!! Not blocking my cervix but very close.
I have to go for another scan at 32 weeks, to see if my muscles are pulling in up out the way at all. If not, more scans at 34,36 etc and if no movement on the placenta, it will have to be a c section!!! Which I really don't fancy at all.
So, please keep your fingers crossed for some placental giggering around in there over the next 12 weeks!!
Plus I've googled, and really don't want any of the horrible things that can happen with placenta problems including premature labour, and placenta bleeding!!!

Apart from that it's a happy little bubba xx

ahh that's fantastic indie, I know lots of ladies who have had low lying placenta at 20 wks and its moved by 32, I think most do but fingers crossed for you. all is well which is main thing, it's great that all you ladies are getting on so well xx

Congrats brummie and indie fingers crossed for next steps now!

Thanks choccy that does help a lot sending hugs today too.

Xx

Thank you ladies! It felt so good to see something positive, all my previous scans since having my son have always brought negative news.

Indiedog congratulations on your 20week scan!! So pleased everything looked good. Did you find out gender or keeping it a surprise?