Recurrent Miscarriage Thread

[smidgen]

LeeC & 9babies - your time will come soon xx

Good luck LeeC for your appointment tomorrow x

 

[padbrat]

Hi Stardust I am only 5 + 3 at the mo.... early days lol...

Thanks LeeC and Smidgen... I so hope that filling my body with drugs is gonna pull this miracle off LOL

 

[9babiesgone]

Wow, this thread moved fast today, congratulations to all BFP's, it's great to hear all the success stories and lots of interesting comments on meds etc, very informative and helpful, that is why I am so grateful I found this forum.

9babies like you I'm waiting for the next BFP, grrrrr, it's driving me crazy xxx.

Yeah it is driving me bloody crazy!!!!

:Hugs:

LeeC & 9babies - your time will come soon xx

Good luck LeeC for your appointment tomorrow x

I Hope so, and thanks for saying that!!!!

 

[livinginhope2]

Hi ladies...

Been reading the debate on medication with interest...

I have had 3 m/c's and lost 4 babies - all at the 10-11 week point. I am now under the care of a fab Obs Cons at Frimley Park and she has told me that as soon as I get a BFP I am to start progesterone, fragmin, baby aspirin and have been on 5mg folic acid for 3 months.

I have just got my bfp and have started all my drugs... including the herparin injections which bloomin hurt... first scan on Thursday. If I can't do it this time with all these drugs to help I am well and truley taking the hint and giving up!!

Congrats Chilli chick! Yay! and Stardust... we gotta keep some PMA chick!

Hi P

Fantastic news that you have an Obs Cons that understands, I am hopeful now that I have read your post that there may be someone out there who will help me when I get my next BFP.

Good luck for your scan on Thurs

x

 

[petitpas]

Livinginhope, many ladies here have suggested you go for further testing. I disagree. Your APS is a very definite cause for miscarriage. Without heparin and aspirin each pregnancy only has a 10% chance of success. I think that you really ought to be seeing a specialist obstetrician. Whoever is telling you to wait with the injections until 6 weeks is talking a load of toss! That is not NHS policy and surely in your case some discretion is warranted. I can tell you that I start my heparin right away when I get a bfp.
With the number of miscarriages you've had, I think uou should go all out and ask for steroids, too. After all, APS is an autoimmune disorder. Getting that prescription will save you all the money and time you would spend with nkcells testing.
If you don't get agreement about the heparin, request to be referred to a haematologist who can deal with pregnancies (sorry, I can't recommend anyone in Scotland, only in London).
I'll see if I can dig out the green top guidelines relating to APS in case there is anything useful in there you can show to your doctor (bear with me, please, I'm on my phone).


Big hugs to padbrat! The injections do get easier. Just remember to keep holding that pinch while you inject the liquid as slowly as possible! Xxx

 

[petitpas]

I found it!
https://www.rcog.org.uk/guidelines
Open guideline number 37, go down to page 15, point 5. Bingo! In summary, having APS and recurrent miscarriages puts you in the high risk category for thrombosis. The guideline is to start with the heparin and aspirin as soon as possible when pregnant!
The guidelines also state that you should be referred to a haematologist or rheumatologist pre-pregnancy.
It's also worth checking the dosage of aspirin that you are taking. Somewhere in the guidelines they mention 100mg daily. My professor let me take 150mg daily saying it would not be harmful. If you've only been taking 75mg until now upping the dose might be a try, too.

Before you ask, I have Factor V Leaden and have had thrombosis before so that is why I am familiar with that particular guideline.
Basically, what you should be saying to your doctor is that by delaying the start of heparin injections they are putting your life in danger, not just that of your baby.

Ultimately, with the right heparin and aspirin management your next pregnancy's chance of success goes up to 70%. That is still a little below the norm, but way way better than the 10% if completely untreated.

 

[hopefulmama2b]

This is why I love this site- I have no idea what you're talking about petit, but it's good to know people on here have experience and information if you need it. It's sad that we all learn through personal experience, but it's good to know you're not alone!

I'm still waiting on my dang chromosomal results- were supposed to be in Monday, but they're not in yet and doc doesn't work Wednesdays so I'm guessing it'll be Thursday. Then I may have some questions of my own I need help with!

 

[petitpas]

You should also read through guideline number 17 if you haven't already (this one will be of interest to all women on here).
In there under the APS section it advises against the use of steroids as it gives a WORSE outcome! So scrap my suggestion above to ask for them

 

[fifi-folle]

Livinginhope and Smidgen I think we could start our own support group, I'm also in Fife! Rosyth. The RMC clinic at the Vic were so dismissive when I had my first appt with them as I was pregnant and they didn't seem to care that I was petrified I would lose this one, they took me an hour late for my appt and didn't let me ask any questions. I had moved up from Edinburgh having seen RMC there and was to discuss heparin for this pregnancy they flat out said no and weren't even keen on me taking aspirin. Hmm this is the first pregnancy on aspirin and first one to get past 6wks!!! (Now 23+4 and still bricking it especially with the spotting I've had for the past month.)

 

[smidgen]

fifi-folle - I can't believe what a small world this is! I am sure if we set up a support group it would be a damn sight more supportive than the Vic - please dont get me started about that bloody awful nurse Maureen!

So they didnt even give you Heparin even though it was discussed with previous RMC in Edin?? That's ridiculous. They gave me a row for taking 75mg aspirin and were totally dismissive of me going to London to pay for tests and treatment - told me it was a load of unproven rubbish basically. And look at me now - a swell 30wks pregnant!

Are you keeping well apart from the spotting? Have you been seen by the midwives at Forth Park regularly then?

Vee x

 

[fifi-folle]

I was kind of shocked by their response, even by the doc at the EPU, their knowledge seems sadly out of date, grr. I had written in my notes by the doc at QMH antenatal clinic something about the aspirin being contraindicated or something, huh? It's just a co-incidence then that this pregnancy has worked!???? It's so sad that you've had to shell out all that money to get the treatment needed when it would have been better if you could save it for when baby arrives but at least you were in the position to do it!

Pregnancy is ok other than the spotting and endo pain but I am not going to complain about either as bubs is ok and that's all that matters!
Hope yours is going smoothly!
Fiona

 

[LeeC]

Hi Ladies. I am so disappointed and angry right now, after my appointment this morning I have been more or less told there is nothing further the NHS can do for me and that they will not prescribe the prednisolone for me and then asked if I could afford to go private!!!

I was so mad I walked upto the EPAS unit and demanded another referral with another ob, infact I think I went crazy and started scribbling notes on the form and underlining them about how I can't carry babies.

Think I'll be getting referred to psychiatry unit!!! I already see a therapsit there and feel he understands more than anyone in ob/fertility in the NHS, he was the one who prescribed the progesterone.

So a big fat thank you to the great British Insitiution that is the NHS, once again you never fail to disappoint

*sobbing*

 

[LeeC]

Ps. Think I'm done

 

[smidgen]

Aww LeeC, I am so so sorry, although I cant say I am surprised - I have no faith in the NHS and I work for them!

That's exactly the same scenario - sorry we cant help... but when we mentioned going private and getting tested for nkcells etc - they just poo-poo'd the idea and said we'd be wasting our money!

I know we've spent a lot of money, but I'd honestly have spent 10 times that to have the one thing i want most in the world - and I am so lucky that the bubba will be here in 10 weeks time

 

[smidgen]

FAO Scottish Ladies

I just remembered something.... when we were at our last appointment with Mr Shehata, we asked about a second pregnancy, and would i have to go on meds etc again. He mentioned that I would as the level of NKCells would more than likely be higher than ever.. I said it would be a challenge,not only financially but also logistically going up and down to London with a wee one to see him.
I suggested that he should take a room in a private clinic in Edin/Glasgow for us Scottish ladies - say once a month.. And he said it would be worth considering if he had more ladies from Scotland as patients... So you never know if there was enough interest from ladies in Scotland he may well start a monthly clinic up here xx

 

[LeeC]

Quick update.

I have just spoken to Siobhan Quenby's secretary, because tbh enough is enough and this is too important to me.
She was lovely and has told me that I am entitled to a 2nd opinion and can def be referred to them by my gp, and if I have any problems with gp, I have to call them back.
So I have appt with my gp tomorrow and am asking for the referral, they said it sohould be ok even though I am out of area.
Does anyone have any experience or attended Prof Quenby's clinic. I know she ran trials in progesterone therapy and NK cells.

When will this all end

 

[LeeC]

FAO Scottish Ladies

I just remembered something.... when we were at our last appointment with Mr Shehata, we asked about a second pregnancy, and would i have to go on meds etc again. He mentioned that I would as the level of NKCells would more than likely be higher than ever.. I said it would be a challenge,not only financially but also logistically going up and down to London with a wee one to see him.
I suggested that he should take a room in a private clinic in Edin/Glasgow for us Scottish ladies - say once a month.. And he said it would be worth considering if he had more ladies from Scotland as patients... So you never know if there was enough interest from ladies in Scotland he may well start a monthly clinic up here xx

Smidgen.

Thank you soooo much.
What a wonderful idea, maybe that's something that needs addressing, I have been disgusted with the NHS attitude, big fail

I would def be interested in seeing Dr Shehata at a clinic in Scotland, I bet there are 100's of women who would, more than.

The ob is seen this morning said to me that I probably know more about it than they do, having researched it and that yeah, they pretty much are dismissive of progesterone therapy and NK Cell testing.

Thanks again, it's great to hear everything worked out for you, soon, and that it was worth all the past heartache xxx.

 

[smidgen]

LeeC - you can get referred to Mr Shehata through your GP too. I just didnt have the patience to wait for an appointment etc. He does work at several NHS hospitals in Surrey.
You should check out his website: www.miscarriageclinic.co.uk

Good luck xx

 

[LeeC]

Thanks Smidgen

I looked at the website some time ago. I have a good friend that lives in Coventry, so I figure I could see Siobhan Quenby at Birmingham Heartlands and stay with my friend, which would cut down on some costs...

I'm really hoping to get a BFP again mid April, as I ov on 2nd April and will def be trying after having 2 month break after ectopic.

It's just a constant uphill struggle to keep going, I'm glad I've got the support of everyone on this site or seriously I don't know what I would do.

Thanks again honey and I'm so excited for you xxx.

 

[petitpas]

Lee, well done on putting your foot down! Brilliant news that you can get a referral for a second opinion
I have fingers well and truly crossed for you xxx