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Miscarriage/pregnancy loss

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Recurrent Miscarriage Support Thread 30 - Support for Tests, Treatments and Trying Again

765 replies

forestnest · 04/09/2015 12:30

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread: www.mumsnet.com/Talk/miscarriage/2441180-Recurrent-Miscarriage-Support-Thread-29-Support-for-Tests-Treatments-and-Trying-Again

(stats etc to follow)

OP posts:
FraggleRock77 · 27/02/2016 12:37

Sorry internet playing up!

fourleafclover82 · 27/02/2016 12:54

Hi fraggle. I spoke to my Gp last week to get her board with the heparin and progesterone treatment as per Coventry protocol. She was happy to do it if that is what Coventry recommended. Now I'm frustrated that Coventry might not even prescribe it now. If you are only getting the biopsy then how can they give heparin to only some peeps?! Can't think what the criteria now is?!

fourleafclover82 · 27/02/2016 12:54

Hi fraggle. I spoke to my Gp last week to get her board with the heparin and progesterone treatment as per Coventry protocol. She was happy to do it if that is what Coventry recommended. Now I'm frustrated that Coventry might not even prescribe it now. If you are only getting the biopsy then how can they give heparin to only some peeps?! Can't think what the criteria now is?!

fourleafclover82 · 27/02/2016 12:56

Hi fraggle. I spoke to my Gp last week to get her board with the heparin and progesterone treatment as per Coventry protocol. She was happy to do it if that is what Coventry recommended. Now I'm frustrated that Coventry might not even prescribe it now. If you are only getting the biopsy then how can they give heparin to only some peeps?! Can't think what the criteria now is?! Especially if you are not under their rmc and getting other blood tests etc done.

fourleafclover82 · 27/02/2016 12:56

Hi fraggle. I spoke to my Gp last week to get her board with the heparin and progesterone treatment as per Coventry protocol. She was happy to do it if that is what Coventry recommended. Now I'm frustrated that Coventry might not even prescribe it now. If you are only getting the biopsy then how can they give heparin to only some peeps?! Can't think what the criteria now is?! Especially if you are not under their rmc and getting other blood tests etc done.

FraggleRock77 · 27/02/2016 13:10

Four, it's so stressful! We can access the progesterone through our fertility clinic but not the clexane which is the same as the heparin. Did you know you can buy clexane on line? I'm stressed again now!

fourleafclover82 · 27/02/2016 13:44

Hey fraggle... Was just joking with my hubby about finding a clexane dealer :) a bit dubious about buying anything on line.... Sad that we have to even consider such things isn't it!

fourleafclover82 · 27/02/2016 13:45

Hey fraggle... Was just joking with my hubby about finding a clexane dealer :) a bit dubious about buying anything on line.... Sad that we have to even consider such things isn't it!

fourleafclover82 · 27/02/2016 13:46

Hey fraggle... Was just joking with my hubby about finding a clexane dealer :) a bit dubious about buying anything on line.... Sad that we have to even consider such things isn't it!

FraggleRock77 · 27/02/2016 14:24

I'm not my husband is a medic!!!!!Grin

fourleafclover82 · 27/02/2016 15:08

Lucky girl Fraggle :)

FraggleRock77 · 27/02/2016 15:50

Oh gosh i wouldn't dare! It's not always a plus x

fourleafclover82 · 28/02/2016 15:36

Hey lovely ladies. Does anyone have any good advice on supplements etc that you are taking prior to getting pregnant? Going to use these next 3-4 months to try and get healthy and balanced. Have started on acupuncture once a week and hoping hat will help a little too. X

Marchgirl · 01/03/2016 12:09

Sorry, been awol for a few days. My local consultant had already prescribed progesterone, so that one was easy (although following the disappointing results of the promise trial, that might become more difficult). But anyway, if you go to Coventry they will prescribe prog for you to pick up there and then at the hospital pharmacy.

Heparin my consultant eventually prescribed as well. I emailed her some papers i had read about its cytoprotective effect and she eventually conceded that it couldn't do any harm. I think most gps refuse to prescribe it initially as it's injections and you need to be shown how to do them, so it's often hospital prescription only to start with (although i was able to pick up the repeat from the gp). I gather there is a hospital in maybe south Wales (?) That will do private prescriptions of meds, so this may be an option for heparin. I think it is quite expensive (about a fiver per injection), so this might explain why they are reluctant to prescribe on nhs now. Also, Coventry strongly advise you get a location scan before taking it, as heparin and ectopics really don't mix well, so this is another consideration.

Steroids my consultant refused point blank to prescribe. She condescendingly told me they were 'very strong drugs'. She said my gp might agree to it, so i went there instead. I didn't mention to gp that consultant had refused, just showed the Coventry letter and asked if she'd prescribe. Thought it was game over when gp said she'd have to check with consultant that they weren't dangerous in pg! But she spoke to the consultant who confirmed they were safe in pg, so gp just prescribed them for me. Very odd that consultant would be so against prescribing herself but then happily advise someone else it was done to do it!

fourleaf, the girls on the fb page will have lots of supplement suggestions. I just took a multivitamin and additionally folate instead of folic acid (apparently more easily absorbed and can help if you have the mthrfr issue)

annaif · 01/03/2016 14:34

thanks Marchgirl for all the tips- not sure if I will be able to convince my GP to prescribe anything more than pg, although I have a couple of boxes left of clexane from last pregnancy when seen at St Mary's!
In terms of supplements, fourleafclover82, Dr S puts everyone on pregnacare+Omega 3, 50mcg of VitD12 and baby aspirin. I have been taking an extra dose of 1000mcg of folate upon St Mary's recommendation, plus extra Omega 3, coQ10 for bettering my eggs quality and Selenium for my thyroid function. Also taking a good dose of Achidofillus probiotics (upon the recommendation of my homeopath that it's excellent for women in general and helps with ttc/fertility) which I reckon may help keep infections at bay if I am to start on immuno-suppressants... prob taking too much sh!t at the moment but helps me feel like I am doing something towards the much hoped end result

fourleafclover82 · 01/03/2016 19:56

Thanks Annaif and Marchgirl for your replies. Will post on fb tonight regarding the supplements :)

So I was having a wee read tonight of a paper which is pro heparin for treating miscarriages regardless of blood disorders or not. Research was carried out by at Mary's. Here is a link which I though might interest some of you :)

molehr.oxfordjournals.org/content/12/4/237.full.pdf

Maybe if I show that to my Dr at St Mary's ( his name is on paper ) then they'll have to give me the heparin!!

Marchgirl · 01/03/2016 20:55

Hi fourleaf. Yes,this is one of the papers i referenced to my consultant to persuade her to prescribe heparin. The other two were 'Effects of low molecular weight heparin and heparin-binding epidermal growth factor on human trophoblast in first trimester' by Chen et al.

And an egyptian study which was particularly positive - 'Low molecular weight heparin (LMWH) for treatment of recurrent miscarriage negatively tested for anti phospholipid antibodies: a randomized controlled trial'. Whilst this was a relatively small trial, the results were encouraging: "There was a significant increase in the number of patients who continued beyond 20 weeks of gestation in the study group compared with the control 70.1% versus 54.5 %, respectively (P=0.002). The take home baby rate were also significantly higher in the heparin group compared with the control group 56.7% versus 35.3%; respectively (P=0.001)"
Both worth a read.

I've not had time to find what it was that has persuaded coventry that it's not as good as they thought, but I'm sure that's what kazz said

fourleafclover82 · 01/03/2016 21:03

Thanks so much for this Marchgirl. It seems that the results from the SPIN study in Scotland show that there were no difference in those that used heparin or heparin plus aspirin.

m.bloodjournal.org/content/115/21/4162.full.pdf

Here is the link. Just don't understand how they can change their minds.

Marchgirl · 02/03/2016 07:06

Hmmm. Interesting. Although this one was testing both aspirin and heparin at the same time, and given that recent studies on aspirin have indicated that it can actually increase mc rates, it is possible that they had opposite effects. I don't know what to believe! The Egyptian trial in 2012 was a positive outcome with heparin alone, but a v small group. There must be something that's come out recently which has persuaded the profs is not worthy of prescribing

magnificatAnimaMea · 02/03/2016 19:20

apparently there is some unpublished research at St Mary's that says aspirin shouldn't be taken before 10 weeks.

Heparin is both anti-thrombotic and anti-apoptotic. So yes, to some degree it's cytoprotective, but that might be inappropriate protection if your trophoblast has something wrong with it, or if the heparin effects are actually making it all the way through to the embryo - iirc there's a fair amount of apoptosis that should going on from gastrulation onwards, and obviously if an apoptosis pathway should be kicking in, then you don't want to prevent it because what triggers it is probably not survivable anyway. So you might just be pushing miscarriage back a week or two, surviving the earlier cytological insults but miscarrying anyway when the insults get too big to survive, by taking heparin. The SPIN study didn't say when their pregnancy losses happened, but n=294 is absolutely tiny anyway.

AnnieHoo · 10/03/2016 12:34

Hello
Sorry to butt in from the past! I haven't posted here for about 8 months since mc4, I just dropped off due to losing heart and almost giving up.. Last thing I said was that I was going to Coventry and I did enquire but didn't have the strength in me to face it at the time.

Saw the article a out stem cells thanks to magnificat on the over 40 thread and it's quite intriguing. Dr Q used Sitgliptin, a DPP4-inhibitor taken orally for Diabetes type 2.

Has anyone found out more about this drug?

V interesting to learn about aspirin too.

annaif · 10/03/2016 15:17

Hi AnnieHoo,

Going to Coventry tomorrow to see Prof B and will ask all about this new revolutionary spin to their research and treatment plan.
Thankfully MarchGirl has offered a long list of points to make and questions to ask! :)

will write back soon hopefully

FraggleRock77 · 10/03/2016 20:04

Great annaif, will wait to hear about your visit with a LOT of interest. Please keep the thread posted. I've contacted them and I'm just waiting for the time to last post D&C x

magnificatAnimaMea · 11/03/2016 02:28

This thread probably isn't active enough to get an answer on this, but has anyone had any luck in getting consultants elsewhere to follow Sheffield/ St Mary's/ wherever, eg by testing for NK cells; endometrial scratch; or prescribing clexane (or other LMWHs), prednisolone, aspirin, progesterone?

I am in a different country. There's only one consultant in the whole district health board region who is interested in recurrent miscarriage, and while i have in theory been referred to a hospital dept where this consultant works, I'm highly likely to end up seeing someone else, probably a house officer who is interested in breast cancer or colposcopy or something. So, I'm going to have to go in with all the right papers showing the right evidence, and ask for specific treatments. I've no idea if this is likely to work.

Suggestions of specific papers/ approaches would be much appreciated - I am quite likely to get told "you could try IVF privately, otherwise everything's experimental and we're not willing to try it" because we can't be arsed reading the literature and the DHB probably won't fund anything like this anyway

magnificatAnimaMea · 11/03/2016 03:11

Oh FFS. Just got a letter from the DHB Gynae dept - after spending half the week on the phone to the GP, clinic coordinator, etc, saying they have refused the referral.

anyone got an illicit supply of clexane i can buy?