RESPONSE trial thread

[Marchgirl]

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

Claire it's Friday for some reason me and girlie have had to wait a week and a day for our repeat scans.
It's more the pain it's the same as before :( x

honestly its a bloody nightmare having to wait. its makes an already shitty time even worse. Thinking of you Louise x

Girlie, please don't worry. It may be a late implantation bleed left over. I had spotting at 9 weeks (pinky red) had same with ds but brown, so it may be completely normal.

The tests I believe were 20 miu at least. The test at the hospital to confirm is 25, which I've complained about as they need to catch it as early as possible, that's the point!!!

Just arrived at hospital for my appt x

Hand holding girlie and louise, hoping for the best for you both this week.

Hope appt goes ok choccy,

Sorry about bfn claire. I'll see you here again tomorrow!

Sorry Louise I missed your post, it wasn't showing for some reason. Lack of symptoms doesn't necessarily mean bad, I think size had nothing early on x

Thanks ladies, choccy it's more the pain as it's the same pain I had just before I miscarried xx

Thinking of you Louise x

Sorry for bringing a downer on here after lots of positive news. Still have fingers crossed for bfps Philippa/ March/ Claire.

Do not even think of apologising girlie, or anyone else for that matter. We are all here for each other through whatever happens

Girlie lease never apologise for anything you write as we are all here tl support eachother and all know just how terrifying it is. Please keep posting, always here God handholding whenever needed. Very sorry that you and Louise are having scary days and I get do frustrated about not bringing scanning firward under such circumstances. Days like these feel like weeks. Sending you lots of strength to get through. I really feel for you.

Thanks ladies, means a lot.

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

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

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.

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

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

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?

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.

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.x

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

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.

Forgot to ask Louise, how's the pains?

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

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 ??

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!!!

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

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