RESPONSE trial thread

[Marchgirl]

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

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.

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

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

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?

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

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.

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

March that explanation made perfect sense thank you x

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=

That's really interesting thanks March !
Coventry is not the best city but I'm bloody glad I live there now knowing how good the clinic is ! I've always heard how people from all over come to Coventry for treatment but I didn't realize they are the only ones to try new things like that :) pretty proud lol xx

Wow! That's a lot to take in but will probably reread wheisny mind isn't befuddled from marking exam questions. Is it only Coventry you can pay for the screeninG? I'm in Manchester. At St Marys for the trial

I think one of the girls is having it done somewhere in Yorkshire, but there aren't many places that test the uterine ones. I think the are several private clinics that test blood nk, but there are conflicting views on which is more accurate/relevant

I think that's next on my to do list get my levels checked. Can they check your progesterone levels too to see if they are low? X

I opted out of the test. Prof Q had already prescribed me cyclogest (progesterone) after my 3rd loss to use for 3 months. I lost 3 more then they offered me the nk. We always said we'd not do anything we had to pay for as we could see it spiralling out of control. If we had no nk answer, then you'd pay for something else etc...
I'm so glad I'm near Coventry for all this treatment. The ladies that have not been successful on the response trial are then being offered the nk test as part of the follow up which I think is absolutely fantastic, it still then gives you hope.
I really hope you get the outcome you deserve March xx

How are you feeling Louise?

Any more blood girlie? So glad it stopped yesterday.

Choccy do they do it for free then if the trial isn't successful ? I'm in the frame of mind it's over so that's good news if it's free !
Pains still there so just trying to wait till Friday I'm hoping I can get the tablets straight away and not have to wait a couple more weeks. I think I'm going to have a break from trying after this is over the past year has been too much.
How are you ? Xx

From what I gather Louise.
I'm sorry you're having pains still :( So shit you can't get in before x

I've had a bit of a bleed this morning :(

Louise sorry to hear that. Was it red or brown? How much was there and are you still bleeding? I think you should call the Response team as Friday is still a while away, and I'm sure you will want to be seen as soon as possible. Wishing you lots of positive vibes.

how you doing Louise? how's bleeding x

I'm losing my mind ha !
It was quite abit now it's only really when I wipe. I'm at work but just want to go home to bed.
I might give them a call I'm in two minds I want a scan sooner but at the same time I'm so scared I want to cancel Friday's and just wait it out :(

So sorry to hear about the bleeding.still keeping fingers crossed that it's nothing but understand your worry. Hand holding till Friday x

sorry for having this worry louise hope your bearing up ok x

how do call from consultant go March?x hope its positive and you got your questions answered x

Sorry to hear this Louise, hope your keeping as ok as can be.

I had my 6week scan today didn't go well. Literally saw nothing at all except thickening of the endometrium, going to Epu tomorrow to confirm etc x

Oh joy im so sorry :( I didn't realize it was today. Hope you are ok ? Xx