Recurrent miscarriages and auto immune issues

[tazpat]

Hi. I am nearly 11 weeks but found out at a scan last week that the baby has not developed although the placenta etc has grown (measured 30mm sac at 9 plus 6 but no baby in there) so I have a MMC. I still have sore boobs and nausea etc. I am waiting for the MC to start naturally but nothing yet. I had a tiny amount of dark blood last week hence the early scan. I was very shocked to discover what had happened. This is now my fourth miscarriage. I had 1st at 6 weeks aged 35, stopped trying for a while, then a DD born in 2008 aged 38 after 18 months of TTC and tests which showed unexplained infertility. When she was one I became very ill with a hideous auto immune disease called Guillain Barre Syndrome which affected my peripheral nervous system. Basically your own immune system attacks your nerves and eats away the myelin sheath leading to pain and paralysis. It was truly hideous. I was told to wait a year before TTC again so the nerves and my body could heal. We started trying again in June 2010 and nothing happened for about a year. Then I fell PG in June 2011 but MC at 6 weeks, PG again in Sept 2011 but MC even earlier at 5 weeks, and then this latest one was conceived in May 2012. So I have been pregnant 3 times in the last year but suffered MCs each time. The other factor might be my age. I am 42 turning 43 in July. I can now have tests for recurrent MC and I wondered if there is anyone else out there who has found that having suffered previously or currently suffering from an auto immune disease has been found to be a factor in their recurrent miscarriage or fertility issues. It's heartbreaking to get PG and keep losing it. I really want to give my DD a sibling. Any advice would be great. Also on who to ask to be referred to if anyone has any experience of that. Thanks x

That sounds awful tazpat. So sorry to hear of your losses.
There is a book called 'Is your body baby friendly' by Dr Alan Beer which is all about immunological issues and how they can cause miscarriages. Definitely worth a read. Natural killer cells are what you need to look into as these often go hand and hand with autoimmune diseases and cause mc's and infertility.
Google the Miscarriage clinic in London- its run by an expert in immunological issues in pregnancy and you can either go privately or push for a GP referral.
HTH and the next few weeks are as gentle as possible

I'm so sorry to hear about your losses too. I have anti-nuclear antibodies (ANA+) which can cause recurrent mc. It was discovered as I have a couple of autoimmune problems and had a battery of tests 1.5 years ago, so wondering if this could be relevant to you. Have you ever been tested for these? I'm currently 5.5 weeks pg for the first time, so hoping everything will be ok, though am obviously worried due to increased risk. My GP said I'm in an unusual position knowing about the ANA prior to pregnancy as it's usually only after recurrent losses that things are investigated and these problems show up. I think there is treatment though, so if it is something autoimmune, there should be options. I haven't really looked into it much as I've decided to try to stay positive for now and research this stuff if need be.

One other thing - have you read anything about gluten and autoimmune problems? There is research suggesting some people are intolerant/sensitive to it, without being celiac, and that giving it up can help control some autoimmune problems. I gave it up (mostly, do have some when out) and have improved a lot. It has even been linked to having problems conceiving.

Hope you are ok and succeed in getting DC #2.

Thanks so much for your messages. I have the Alan Beer book and it is sat unread on my bookshelves.....Just got Prof Regan's book on MC too. Will read up over the coming weeks. Thanks for recommending the Miscarriage Clinic. It looks like they really specialise in auto immune issues so I might give them a call and see what the next steps would be. From other posts it looks like it might be worth going direct rather then through the NHS but I guess it all depends on cost. I've also made a GP appt so will prob try to get a referral too.

Big Fairy - congratulations on your PG, so exciting. I hope you have an enjoyable and troublefree PG. It is good to be in a position where potential issues have been picked up beforehand so you can have appropriate treatment and care. My midwife hasn't even called me after sending me to the EPAU over a week ago so I think I might ask for someone else if I get another shot at it all. Having a good healthcare professional on your side is such a boon. I had a great pair of midwives with my DD but I paid for them as I wanted a homebirth and in London that is very difficult to achieve on the NHS. I also wanted to get to know my MW which proved impossible at St Marys in Paddington, although ironically I ended up delivering there after labouring for two days at home. Thanks for the info on gluten too. Did you have any tests or just decide to cut it out anyway? I love bread but I guess you can get glutenfree versions.

Still waiting for something to happen with my MMC. I really dread having to look into then ERPC route. MMC is its own special kind of torture :(

I just decided to cut out gluten for a 2 week trial period after reading about it, but then continued as I noticed an improvement in my psoriasis within a week. It has not completely cleared up unfortunately, but it is more manageable than it used to be. Thanks for the congratulations - yes very exciting! Really hope you get yourself sorted soon. Take care x

Not been able to check this fully, but GBS is assoc. w anti phospholipid antibodies. Anti phospholipid syndrome (aka Hughes syndrome) is assoc. w recurrent MC but trials have shown that aspirin can improve outcomes. Worth checking out? There is a Hughes syndrome foundation. Best of luck. X

www.aspirin-foundation.com/suitability/documents/PosPaper-APSorHughessyndrome-pregnancy-Nov05.pdf

www.patient.co.uk/doctor/Antiphospholipid-syndrome.htm

Big Fairy, I might try that too. One of the residuals from my AI illness is fatigue and I know gluten can be a culprit for that too. Thanks for the info.

Sausagerolemodel, I bow down to your superior googling skills! I have been looking for a link between recurrent miscarriage and GBS which I suffered from and have drawn blanks everywhere, including the community of fellow survivors. GBS only affects around 1500 people a year in the UK, so the pool of people to ask is relatively small, and of those many are children, older or men so chances of finding someone else who has had GBS and recurrent miscarriage is very small. I am going to go to a recurrent miscarriage clinic as soon as I can get an appt, and Hughes Syndrome will be top of my list of tests. Thank you so much xx

Hi tazpat, Blue has good advice - do read the Alan Beer book, it's very interesting about intolerances and also mentions chemicals in cosmetics and enviromental chemicals (dry cleaning fumes etc) that may go some way to contributing to mc as well where it is unexplained (progesterone, uterine structure, placenta all checked and fine) Perhaps the theory being that the mother has to have a susceptibility to this in the first place or everyone would be having a mc. I wish that he was in London. An alternative probably is the recurrent miscarriage clinic. The Lesley Regan book is good too although some think she has a more conventional outlook. Something thought provoking in her book; there's a experiment they conducted with 'loving care' where the medical professionals were extra caring and considerate to the patients and callled them in more than necessary which resulted in a better success rate compared with the control group who were treated as normal. I believe that stress plays its role in those who are sensitive to changes to routine and upsets and can certainly cause skin and digestive systems to flare up and more so if there is already a problem.
Let us know how you go with your tests. Hope you get some more answers.

tazpat - there are several women on the conception thread who are trying prenisolone for immune disorders related to recurrent miscarriage.

I have recurrent miscarriage and the only two possible causes are immune disorder (ANA+) or my age. When you look at the miserable statistics for women in their 40's, it is a 50% miscarriage rate. I have since my last child in 2008 had 11 more miscarriages (varying from 5 to 11 weeks).

Having 3 children I consider myself blessed, but it does not take away from the pain of the recurrent miscarriages. I have tried dietry changes, I have tried progesterone, asprin and heperin and even prednisolone, but to no avail so far. I have been to prof Regan's clinic, and to several other recurrent miscarriage clinics and had many many tests, all showing absolutely nothing other than a slight rise in blood clotting during pregnancy and ANA+, which could well be linked, but with not solution for me.

I don't think I can offer much in the way of hope to you, but can say you are not alone in the recurrent miscarriages with immune issues.

Thank you all for taking the time to respond.

Willitbe, I am so sorry for your losses. I am 42 nearly 43 myself so I did expect that I might have trouble conceiving, and that I might lose a pregancy to chromosomal problems due to my age. I had my DD at almost 39 after one MC and 18 months of further TTC. I didn't TTC again until I was almost 41 due to the serious auto-immune syndrome I developed when she was one. I gave up working and moved out of London to reduce stress and to focus my limited energies on my family. I then struggled to fall pregnant for over a year until I started having reflexology. The first visit I had showed problems in almost every part of my body, including all the reproductive bits. The good news was that I responded well to the reflexology and have fallen pregnant three times in the last ten months, despite my advanced age!! Unfortunately all have ended in MC which suggests something other than being ancient is affecting the viability of my pregnancies. I called Prof Regan's clinic today and if I see Dr Raj Raj, I can get in in early June so I think I will do that as I strongly suspect the autoimmune illness or the anti-epileptic drugs I was given to block the horrendous neuropathic pain may have triggered another autoimmune illness like Hughes Syndrome. Apparently once you have one, you are quite likely to get another. Oh the joys.....Will report back once I know more....

If you haven't tried reflexology, I would highly recommend it. It seems our bodies can hold onto traumatic events which can continue to affect us long after the original illness or event has passed. I am quite a sceptic, but this woman who had never met me, and to whom I told nothing until after the treatment and verbal feedback, identified an issue with my right eye (amongst all the other things). What she could't have known was that the right side of my face was completely paralysed during my illness and my right eyelid could't close so had to be taped shut and manually kept moist until the paralysis receded. How they tell this from rubbing your feet, I will never know! Convinced me to give it a try though. I think it helps with stress reduction too.

I have an appt with the EPAU tomorrow morning. It's ten days since I found out my pregnancy had failed, and I still have all the symptoms of nausea, sore boobs, really bad indigestion etc. I suspect they will push me to have an ERPC and I might just give in. Waiting to miscarry is pure torture. Having had three before, I know I can do it and cope, just wish it would start. I dread having to have a procedure.....

Ahhh i feel like i am amongst friends on this thread!
Im nearly 42, have just had my 7th mc
all tests are normal.

This gentleman Dr Raj Raj/I ?? is coming up allot in mc threads..it makes me curious....
I had given up pretty much, all hope.

Do you think that time will come for you?

Hi tightwad. Wish we were all on one of the other threads......so sorry for your losses. It is heartbreaking every time, I know.

Apparently often the tests for antiphospholipid syndrome aka Hughes syndrome are not always carried out thoroughly enough so some people have false negatives. Can you tell I have been reading Prof Regan's book on MC? If you haven't read it, it is very informative on recurrent MC in particular. Might be worth checking to see you have had both the tests for it as I understand some hospitals only carry out one.

I am going to check out the autoimmune cause for recurrent MC as I have had two of the things clinically associated with Hughes syndrome (thanks to the info I have got from all you lovely MN ladies) so that's a serious possibility for me. If I have all the tests and there is no underlying cause I might give it one more go, but I am sure there will come a time when I will know its time to stop and just get on with my life.

I saw Dr Raj at Prof regans clinic in London. He was the first person that I saw that actually listened to me and who made the most sense regarding tests and results of tests. I had the TEG test for clotting (while miscarrying), and it showed up slightly positive so he recommended asprin for future pregnancies. However it does not seem to have worked for me. He described to me that I was abnormal in being able to get pregnant so quickly and so I had an unfussy uterus that was allowing conceptions too easily and allowing me to become pregnant with non-viable pregnancies.

I have managed to talk my current local consultant to prescribe me prednisolone on the back of having a slightly ANA+ result, the consultant is horrible, but at least he is doing what I have asked, as I truely believe I have an autoimmune basis for my miscarriages. Either that or I have been very unlucky getting so many non-viable pregnancies in a row.

My last miscarriage was in January this year. We have got to the point of not actually trying, but not preventing. Though after years of tracking my cycles I am fairly sure when I am fertile and when I am not. Now when I get pregnant, I no longer expect to have a baby, I almost expect a miscarriage and just wonder when it will happen, and how. I am now 44 and would be very surprised to have a successful pregnancy at this stage.

tazpat - so sorry to hear that your latest miscarriage is not going smoothly, I hope that it resolves soon. Have you had an ERPC before?

Willitbe I am going to see Dr Raj. Got a message from the clinic yesterday and if I go privately they can see me in a couple of weeks so will probably do that. It sounds like you rated his expertise so that is reassuring. I hope things work out for you too. Before contraception women regularly had babies in their forties so I try not to place too much on age. If it helps, my great grandmother had her last at 50, he weighed a stone at birth ( !!) and he was the brightest of all her children. There is always hope x.

BTW EPAU happy for me to hold on for natual MC so I'm going to wait it out and give it to the end of the first trimester. I'm 11 plus 2 so another couple of weeks. Will try some reflexology to see if that kickstarts things.

Ooh, good luck tazpat. Very sorry about you having to wait out for natural MC, it's not nice but once it's over recovery is quite fast on the physical side.

Very true about women having babies into their forties - I had a look in the census a while back and the grandmother who was always going on at my mother to not leave it too late in her early thirtis was born to a mother who was 42! Cheeky woman. That was in early 1900s when they didn't have half the knowledge about nutrients nor access to them as well as medical care. Wow, 50 years, you must have some good genes, yes, there is always hope! Reflexology is excellent for regulating the body. If anyone else is reading this, be careful with reflexology during a pregnancy and seek out someone who has had many pregnant patients and is a registered member of an association.

Do let us know how it goes. Best of luck. x