Recurrent Miscarriage Support Thread 16 - tests, treatment and trying again

[Justonemoretime]

Information, support, hand holding, tea, sympathy and a hell of a lot of combined knowledge - all welcome as we try to make sense of the RMC roller coaster of tests, NHS admin, heart ache and (hopefully) happy endings!
Please start with a recap of your stats :)

Sorry it's really hard at work brummie. It's nice that your pg colleague is being sensitive and considerate but at the same time, she is pregnant! And I can understand how you'd just need to get away from this. Doesn't sound very good of your boss to pressure you into not taking anymore time of though. I'd be tempted to think 'fuck it', you're doing your best by trying to get back to work so they should help you out as much as they can. I agree with andcounting and some of the things she listed sound a good idea.
sun I hope you find out your test results and it helps you one way or another
flen and march good luck with your testing! Hoping I read some good news tomorrow but no pressure! I'm going to try and fail fail fail and not use any opks or pregnancy tests until I'm late for af next time, ha who am I kidding! I've also done lots of secret testing in the past and hidden them in the bin so hubby couldn't tut at me!
jady glad you have had some positive thoughts that are helping you deal with this. I have found the whole process of mcs very up and down and just when I think I'm doing really well it smacks me in the face and I feel so sad and empty. Realising this is normal tho does help
bootles try your best to treat yourself and have a little break, a happy mummy is a good mummy (not that we're crap if we're sad or it's going to make everything fine but sometimes I think we need to give ourselves a break and in turn it benefits the little ones)
baking I hope today goes well and it is good news for Faith, thinking of you all x
tanny nice to hear from you and it's lovely you're feeling 'serene'. I felt like this with DS but wonder if I'll ever feel that way again if I'm lucky enough to have another dc.
andcounting bless your sister. It sounds like she's come through the other side (although I imagine it will always be there in the background) and I bet you're so proud. My brother has bad mental health including psychosis which can be quite scary and very hard to deal with. It's very worrying when someone close is ill in this way which I'm sure you'll relate to.

Well I think my lucky socks were lucky! My sons app went well this morning and this afternoon I bought some lovely suede knee boots for £25 instead of £100!

Just back from rmc appointment and actually was more positive then I was expecting, although chromosome results not back yet.

One thing she said surprised me - apparently there is a correlation between the more miscarriages a person has, the more likely they are to be chromosomally normal. Evidence for what we all know - there is definitely something else going on here and medical science has just not understood it properly yet.

I asked about nk cells expecting her to huff. Instead she said very early days and not a lot of evidence but that if I did want to go down this route she recommended Coventry as they test uterine not blood. Also said she works closely with them.

Progesterone - she said the long awaited trial - can't remember the name - is concluded and her understanding is that they will publish to say there is no evidence that progesterone helps.

Heparin - she said very few human trials and the ones that are dont show an effect, but some positive results in vitro.

But she said if I wanted to try progesterone and heparin she would prescribe them. Which despite her advice that they won't do any good, makes me feel massive relieved.

She also mentioned the response trial which is looking at how the endometrium could be involved in miscarriage. No direct benefits to participants but could help others in the future so may do that.

Sorry for the long post!

X

... Actually I got that last bit wrong - the info leaflet is a bit misleading. Reading about response - it is a double blind trial so either a placebo or a drug called nt-100 which they are testing as it apparently mimics a protein in the uterine tract to optimise maternal - fetal tollerance.

Hi all - quick post to say that Faith's EEG went well and is much more normal than a fortnight ago so we can start to wean down her meds. They are still being v cagey as we are no closer to a reason why it happened but it's as good a result as we could have expected from today

sun I had seen in other places that the PROMISE trial was likely to show some positive effects? It only tested progesterone from BFP which the Coventry studies would say is too late anyway.
The RESPONSE trial us to test NT100 which is an immune modulator, don't understand the details but something along the lines of the NK cell theory/pred type of treatment. Why do you say it won't benefit participants? Surely a randomly allocated half will be on the new treatment which they hope will have some benefit?

Will try to catch up and read back a bit later on!

That's great that you had such a positive appointment sun. What a refreshing change rather than the back biting some people have experienced when they talked about Coventry.
Someone on this board said that they were at the hospital where they led the promise trial (the one about progesterone) and that they hinted it was a positive outcome, so who knows. I had no response to my email asking when results would be published. Hopefully soon so well know either way.

The egyptian trial for heparin use (tested on people) did indicate a positive outcome, but maybe it's not been well publicised. It's also hard to know how stringent other countries are in their testing.

All that said, it's fab that she's prepared to prescribe anyway. I have to say, even if those meds don't actually do anything, at least you're going to feel like you've tried everything, which has to help minimise your anxiety.

Cross post baking. Glad to hear that the eeg went well and that you can start to wean faith off the steroids. Hope you're all doing ok

Great news baking so glad things are settling down and she can start to come off the meds. Xx

jady pleased your nurse was friendly. Yep my v friendly nurse was super positive about the results they've had so far. I'm trying to manage my expectations, but for the women who have the antibodies it does seem to be working. It's good that they can arrange early scans too. I was thrilled when they found the antibodies because it is the first time anyone found something (albeit something with only trial meds) all the best!

flower thanks for your encouragement for my sister. Hope your brother is doing well. PS that is £12.50 per boot. (Always report cost of footwear as price per shoe!)

baking I'm so pleased today went as well as it did. You must be exhausted.

Brummie I'm so sorry you had such a bad day, this is a hard journey and people don't understand until they've walked in our shoes.

It is quite natural that you are grieving and I tend to deaf out anyone who tells me otherwise. It's really their problem if they can't handle the fact you are understandably heart broken.

I can't remember if we have discussed it before but have you tried counselling and / or acupuncture? They aren't quick fixes but both of them helped me at my lowest moments.

Enjoy your tonight and try to remind yourself that there will be brighter days ahead. Hugs x

Ah - that's good news baking - am so pleased that at least you can get her medication down.

I got it wrong about the response trial. For some reason it says in the very very vague info leaglet I was given that there is no benefit for participants, but reading the website that clearly isn't the case - well at least it isn't if you receive the trial medication.

Interesting that there are rumours of a positive outdone for the promise trial. Really hope so, as I am most definitely going to take it this time round!!

march that's it exactly. I just want to feel I have done everything I can to make this next one work.

Good news about your consultant sun. Does that mean that you are still under consultant care and will have a follow up appt. I've already been discharged from my RMC once...

Hoping mine will be as receptive as yours to Coventry protocol.

brummie how did the rest of your day go? Time to relax now and restore your tissues.

That's it, I'm done working for six months!

(Will read and catch up properly in a bit..)

Hi counting - I have been told to get back in touch with the rmc if either I go to coventry and get results and protocol from them - rmc will then provide the medication per that protocol or if I decide not to go to Coventry then I will get progesterone from bfp and heparin from scan from rmc.

tanny - woo hoo to you being a lady of leisure ( I know, I know, it's not leisure but I like to dream it is and that I'll also be a lady of leisure soon ) x

Brummie so sorry you've had a shitty day. I agree with everyone that Counting has some great suggestions. You really need someone on your side in all this.

Counting your sister sounds great. I'm an only child and that's the sort of thing I really feel I miss out on.

Sun what an interesting day you've had. Having a supportive consultant who treats you like a thinking person capable of making decisions about their own care is great, and being open to the Coventry protocol is a double whammy!

Baking so pleased to hear that. Well done Faith!

Really pleased Baking! Are they still saying no news is good news in terms of finding a cause? More normal eeg has got to be good either way.

Congratulations on finishing work tanny.

Glad you had a good appointment sun. Interesting about the promis trial. Dr at st Mary's seemed to think the early results were promising but maybe he jumped the gun.

Big hugs brummie. Hope you manage to recuperate a but over the weekend.

Yay tanny!

baking that sounds great, really glad it looks like it's settling.

tanny aaaaand relax! For a tiny bit!

baking that sounds positive. So glad to hear better news x

brummie I think it was tanny who said she felt at times like she had a gaping wound no-one could see. Its so hard isn't it - people really do seem to expect you to just move on. Grief doesn't work like that. I'm so sorry your boss is being an arse. Do you have a decent HR department? Maybe consider writing down the things he is alluding to and keeping a record. You need support and kindness right now, and if you need time off, you need it. I am working on Sunday and dreading it as also ended up in tears in the toilet. Hope you have a peaceful weekend x

Thanks flower, yes I know you're right.

sun having a supportive consultant is very very helpful. In my last pg it was highly stressful trying to get people to prescribe the Coventry protocol.

I chased my EPAU yesterday for results of karyotyipng on my last loss. They called back today - no bloody results because there was 'not enough tissue'.I had a 2.3cm 9 week foetus. I had an ERPC partly to ensure there was the best chance of getting a result - I wasn't keen on passing something that would be that recognisable at home, but I would have done to avoid this. I know that the process of an ERPC is such that this can happen, and its not anyone's fault, but I can't help but think some idiot screwed up along the way and that's just what they say. I have had results with the last 3 losses before this one, and always found out the gender because it helps me in a way I find hard to describe. Now I feel something else has been taken from me, because I will never know, and obviously the chromosome situation would be highly useful information. The Dr who called me was business like - I know they do this all day, but I said how disappointed I was, and how this was my 5th, and somehow her response was lacking somewhat. I am just a loss now. Things feel very very bad all round. Tonight I have to write a sodding essay for this course I am doing, so can't even drown my sorrows. I am so f fed up with this whole bloody sodding thing. sun* its interesting what you were told today about the more losses the less likely it is to be chromosomal...after 5 they are still telling me its age and bad luck - at least I have seen Prof Brosens in Coventry - but I have high NK cells and was on prednisolone and now don't know if this one was abnormal or not! aarrgghh!

Sorry for the rant, I will stop now, but I have given up telling this stuff to anyone else .

Yeah Tanny, enjoy this "quiet" time before the next chapter of your story begins

Baking, pleased to hear Faith is doing well x

Brummie, big hugs and hope your drink of choice is going down well. X

Spent the last few days visiting another office in Scotland (yeah I got to see snow!) was a hard few days as I was meeting a few colleagues for the first time that I have spoken to on the phone for the past year. Turns out three of them were heavily pregnant. Lots of gritty teeth!

Bootles I am so sorry. That is the worst news at this point. I had no results after my last one and it was gutting then so I can only imagine how it feels in your circumstances. I suppose you can only proceed on the basis it could have been chromosomal and make a decision on what to do on that basis. Really gutted for you though, and sorry the Dr was a cold hearted cow. If it's any comfort I sent what I was assured by the gynaecologist was the sac after a natural mc and was told the same thing (though it,was an earlier gestation) so erpc may not have been the wrong decision.

bootles that totally sucks, I'm so sorry. I would be incredibly frustrated in your position too. So hard to keep doing life stuff with so many questions and frustrations hanging in the air. What happens next for you now?

Oh bootles. So so sorry to hear that. I also got no result for my last one and it was totally devastating not to know. I know it was so much more important for you in terms of your treatment plan, so imagine it must feel a million times worse.

You don't have to make any decisions on what to do now. Be kind to yourself and let this sink in. Maybe you can speak to Prof brosens about it too. At least he seems likely to have a better appreciation of your circumstances than this doctor you spoke to obviously does. Massive hugs

Bootles that really is shit and girliesaints that must have been so difficult, well done for being so brave. In fact everyone on this thread is pretty amazing, I'm in awe of most of you most days and the amazing advice and support you give whilst going through such hard times, from the rawness of a recent miscarriage, trying to get back to every day life to progressing through pregnancy to your take home baby, the worry never end's. confidence can take a real beating which makes it all the more amazing the support offered in this thread.