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RESPONSE Trial for recurrent miscarriage: Thread#3

975 replies

Marchgirl · 29/06/2015 13:10

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

OP posts:
Thread gallery
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Kazz2112 · 03/08/2015 12:54

phew! how far are you Brummie? great news!

Brummiemum87 · 03/08/2015 13:04

8weeks 2days now, it's the furthest I've got since my son! X

Marchgirl · 03/08/2015 13:24

That's fantastic news brummie! So pleased and relieved for you Grin

OP posts:
Choccywoccydodah · 03/08/2015 13:30

Brummie MASSIVE news, such a relief for you!! Absolutely thrilled for you!!

Joy amazing news, double pink. How lovely Smile

clairemorgan81 · 03/08/2015 13:33

Ahh brilliant news brummie.

hope.your okay gen and feel a little more settled hopefully bleeding was a one off x

Vicki272 · 03/08/2015 14:36

Brilliant news Brummie!

x

philippa88 · 03/08/2015 14:39

Brilliant news on the scan! Little steps :)
Kaz you're best not testing, it won't change the outcome and will only stress you out! Step away from the tests lol!
I'm off to the dr's later as I'm finding it really painful to wee! They tested me for a uti last week and it was clear, but when I go it's like a heavy pulling feeling and I have to grit my teeth! Anyone had something similar? Xx

Choccywoccydodah · 03/08/2015 16:31

Just had first growth scan. All measuring bang on and baby currently 3lb 1oz, so a bit bigger than they measured at the 4d scan Friday.
Didn't get to see the consultant as it was packed and a massive backlog and we had to leave after an hour. Can safely say if I can help it I WILL NOT be having this baby in hospital. Bloody awful!! Staff are great but I just cannot do it!

philippa88 · 03/08/2015 16:34

Fab news choccy - it's so nice to see baby!
I'm back from the docs with no uti and was just told there's not much can be done whilst pregnant. He did offer antibiotics 'blindly' but I didn't want to take them. More painful weeing for me then lol! Xx

Kazz2112 · 03/08/2015 16:38

Have you tried cranberry juice Phillipa? I've had a lot of problems with kidney stones and cystitis in the past and swore by it.

Also - as much as it hurts drunk loads of water to flush it through.

clairemorgan81 · 03/08/2015 16:51

lovely that your measuring bang on choccy. did you have a homebirth with ds? what made you want to? x

clairemorgan81 · 03/08/2015 16:55

oh and choccy you know with all of your previous mc's, was there ever a reason for them?
just thinking how amazing it must be to be finally pregnant and this far on, you must be so relieved after all you have been through.....sorry about all the questions hope you don't mind x

Kazz2112 · 03/08/2015 17:04

Another question to add to the thread... Has anyone noticed their urine being very bright yellow after starting the injections? Like neon yellow????

Also - I know this is something that I should already have asked and understood - but how does the trial drug supposedly work?

Kazz2112 · 03/08/2015 17:11

on second thoughts... I think it's more likely to be the vitamins!

Choccywoccydodah · 03/08/2015 17:35

Claire no reason for my mcs. I personally think it was an implantation problem which is what the trial is meant to help with.
I didn't have a home birth with ds. Being my first I was too scared to but he was straightforward and relatively quick (5.5 hours when got to hospital, 55ins pushing).
I just don't want to be in and stay away from ds. I was kept in due to short staff last time.

Kazz have you started taking vitamins as mine goes neon with pregnacare!

Choccywoccydodah · 03/08/2015 17:36

Sorry missed your last post Kazz!

clairemorgan81 · 03/08/2015 17:42

do the tests they run show if implantation problem? I presume not?
sounds lovely Im sure you 'll get homebirth Smile I would also hate being away from ds I've never left him overnight and he has slept in our bed since he was born!!

kazz defo vitamins!x

Indiedog · 03/08/2015 18:24

NT100 is a proprietary recombinant form of human granulocyte colony stimulating factor (G-CSF), and is not biosimilar to any marketed G-CSF or to any G-CSF currently under development. NT100 mimics the biological activity of a naturally occurring protein in the female reproductive tract to optimize maternal-fetal tolerance. By optimizing maternal-fetal tolerance, NT100's mechanism of action may better enable pregnancy maintenance, resulting in reduced rates of miscarriage.1

Kazz, above is the extract from norotherapeutics, the people developing the drug.
Basically their gobble de gook, means they hope the drug reduces cytoxic cells, that's would want to reject the foreign body (embryo) and increase the women's maternal-fetal tolerance, so increase the protein etc that helps sustain the embryo and ultimately the pregnancy.
Basically trying to stop the body rejecting the embryo, and giving it a chance to embed and grow.
They think most unexplained MCs, for women that all the tests come out ok, is the body overreacting and rejecting it.
Hope that helps.

clairemorgan81 · 03/08/2015 18:33

great info indie thank you. gosh I hope I get on trial x

Indiedog · 03/08/2015 18:37

Ah choccy, lovely news about your growth scan. I have a scan at 32 weeks coz on placenta!

I didn't have a home birth with DD, as I had a troublesome pregnancy, nothing that would stop a home birth, but all along I said she is a pickle and won't come out easy, I just knew it. Low and behold, 35hours labour, not dilating fully, a very stressed baby, drop in oxygen, rushed into theatre, spinal block ready for c section, she was eventually pulled out as she had moved into the right position.
I also had the chuckle brothers for midwives!!! They took me on a trolley to theatre, and clipped off my drip to move me. Then in theatre, wondered why my contractions weren't coming again. Chuckle brothers had forgot to unclip the drip. I had to point it out!!! Oh well, all ended well.
Funny how it doesn't put you off doing it all over again.
But I will defo be going to hospital, and hoping this one drops out of me this time!!

Kazz2112 · 03/08/2015 19:11

That's really interesting and helpful Indie. Very informative. But... I'm still confused.

One give away sign of someone being on the trial drug (NT100) would be a high lymphocyte / white blood cell count (apparently my doctors have been asked not to run any full blood counts as it could unblind the trial). What I don't understand is why the drug causes an increased immune response as it is the immune system that causes the rejection of the embryo?

Is it ridiculous that I'm disappointed that I'm not finding it stings massively / for long so I'm clearly on the placebo

Indiedog · 03/08/2015 20:20

Sorry Kazz, that's my understanding too, with regards to the raising WBCS count etc. I guess the trial team would be best to ask if you want more of the ins and outs.

Vicki272 · 03/08/2015 20:24

Kazz... Try not to second guess it. Trying to work it out won't change anything.

Hope you don't mind me saying... I've been there with the panicking and it won't help. I know it must be hard.

Claire... Where are you in the cycle at the mo? (Sure you must have said but I lose track!)

So... Based on calculations, if this smiley is right then I would be back on the 28 day cycle...

The cheapy ovulation kits have got lines but I'm not sure if that's as dark as they go?? I'll send a pic... Xx

Vicki272 · 03/08/2015 20:27

What do we think ladies? X

RESPONSE Trial for recurrent miscarriage: Thread#3
clairemorgan81 · 03/08/2015 20:38

its quite difficult to see on pic vicki but looks pretty close, if cb is positive just keep dtd until it goes negative but I would keep testing just in case you get a second one. I would think your cycle will be around 28 days this month Smile

I'm 5dpo so not far ahead of you x

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