Antinuclear antibodies positive - advice please

[mariafresnel]

Hi everyone,

SOme of you may know me through bubhub where I've shared my baby stories.....our first, Sophia is our first and she is 15 months. We were in and out of hospital for the first 12 months with her - life was tough, but much better now. When Sophia was 7 months we fell pregnant with her brother Perri. Perri is no longer with us, due to some very misinformed test results, we terminated him due to genetical issues where they told us he was so abnormal he would not survive the pregnancy. We terminated his pregnancy when I was 5 months, this August. Life was sad, and especially more so when we found out that the test results were incorrect, and baby Perri was normal - pure devastation. 3 months afterwards, in October I fell pregnant again. This represented hope. Unfortunately, at 6.5 weeks, red blood and clots signified the end of this pregnancy and the hope of a new life.

After visiting two obs after this second life lost, I have had two independent opinions by two reputable GYN/OB. The first, a professor, said 'you've just had a whole bunch of bad lunch, I'm not going to run any tests, because it's normal for 50% of pregnancies to end in grief!'......( a man!)

The second, another reputable GYN/OB, (a woman), was very compassionate, has 3 children of her own, and agreed to run a whole bunch of tests. Reluctantly because you would ordinarily have these tests after two miscarriages, and technically I had only had one. I told her that I didn't want to loose another, as I feared that I would hate to live.

The tests revealed that everything was normal, except for my anticulear antibodies, which are positive. Antinuclear means that when there is virus or bacteria in your body it fights the invaders, instead the ANA in my red blood cells, (in my words) eat other good red blood cells. So when it comes to implantation, there is significant mistakes happening where my ANA affects the implantation by fighting the cells as they create the embryo and the placenta.

HERE's THE QUESTION - to anyone who has had or has ANA + and has tried to fall pregnant, and has had a successful pregnancy, did you take any medication?
Did you take low dose asprin? If so, did you take it prior to conceiving, or did you take it the first day taht you missed your period? Did you take any other prescribed medicatioN? If so, what was it? Was it for ANA+? when did you take it? Did you have your ANA tested every so often? Did it go down? Did you fall pregnant with ANA+ and was it a successful pregnancy? Was your baby ok?

Any advice, knowledge, real life personal experience would be so appreciated, as I've had conflicting advice, and I'd like some of my bubhub mates to help me out!

I'm really looking forward to your responses!
Maria

[stevesamantha]

I am ANA positive and have had 3 miscarriages (no pregnancies have been successful). I lose all around the 6 weeks mark - although the last pregnancy loss at 6 weeks didn't actually result in a miscarriage until weeks later, even though we'd been told the baby's heart had stopped "flickering" around 6 weeks. I still held onto the hope, but it wasn't to be.

I didn't take low dose aspirin and I feel guilty because maybe it would have made the difference.

I don't have any of the answers you seek, but I can say that NOT taking aspirin seems to be a big mistake.... I'll definitely be trying it next time, even though it makes me feel like ****. If no aspirin results in 3xMiscarriage, then maybe us ANA girls would be better off trying the aspirin (even though it's usually not recommended in a "normal person's" pregnancy).

Good luck for both of us in the future huh? It ain't easy being a girl.

[nicki_mara]

Hi Maria,

So sorry to hear of your losses. I have a medium positive ANA reading and am currently 32 weeks into my eighth pregnancy (which will hopefully result in our first baby).

I attended the Recurrent Miscarriage Clinic at the Royal Women's in Melbourne and this was where my positive reading was discovered. I was initially put on 100mg aspirin daily which I had to start taking BEFORE conception so that it was in my system. This however was not enough for me to sustain a pregnancy so this time I am taking the low-dose aspirin and also heparin which comes in the form of an injection. I take the aspirin in the morning and inject myself with heparin once a day at night. I started the heparin at around 6 weeks. I continue both the aspirin and heparin until 35 weeks into the pregnancy and then I can stop. I can't answer whether the baby will be ok but from the ultrasounds all looks good.

I hope this helps and if you have any questions just let me know.

Take care, Nicki :hugs:

[mariafresnel]

Hi there, (Sorry I don't know your name),

Well thanks for your email, albeit a sad topic - losing our babies. We've lost 5 (4 miscarriages and one still birth). We are incredibly grateful to have two live children on either side of all our angel babies, Sophia 4 and Sienna-Rose 1. It's with Sienna-Rose that I chose to do things differently. That's when I found out about ANA. I think the reality about the medicine is 'who' you speak with. One OB suggested Asprin (Carita?), and then when I told my OB through IVF (That's what I mean we even thought that 'more of the same will give us more of the same, so we had our last baby via IVF, which left minimal chance for loss, and maximum chance of 'getting the best of the best') she said that she had seen it many, many, many times before, and basically the ANA prompts our bodies to almost clot the placenta as it is creating itself, and therefore resulting in a non viable baby. So she scoffed at asprin, and once I was pregnant I had to inject myself every day for the first trimester with a blood thinning medicine called CLEXANE. It was managed, and only needed for the 1st Trimester, because that's when the placenta is forming itself. Didn't need it before falling pregnant either. The other things I did before falling pregnant this last time was see a fertility acupuncturist to help prepare my uterus for 'keeping the baby', and a naturopath to provide the best herbs and vitamins based on my blood work which told her my deficiencies. Also I took 5mg Folic Acid prior and during, as well as Iron. I also changed my diet and only ate organic food. Fool I know, but it's worth it.

So if you need any other information, let me know, I'd be more than happy to share any experiences and/or information/knowledge I have with you. I feel so much for you as I do really know how much it hurts to be so excited and after losing so many, you become so scared until you reach each milestone to see what will happen next. Please know that your pain and shear disappointment is raw and meaningful, it's part of your history and part of your journey - it's a horrible journey to get something you wish and want for so much, and after 3 years of losing babies, and holding our little boy in our arms, that was the fire in my belly I needed to say to myself, ' I need to find a doctor that wants this as much as me, and not treat me as another number, with another miscarriage'....and I found her, Devora Lieberman and Sydney IVF, who manages the IVF Miscarriage clinic. When I fell pregnant her clinic monitored my bloods every week for the first trimester to make sure the progesterone was increasing, and everything was fine, if it wasn't she would do something to make sure the baby would stick. She made the difference for us.

With love and sympathy for your losses,
Maria

[vernisse]

Dear Maria

It has been many years since you started this thread. I have been just diagnosed with Antinuclear Antibodies after multiple miscarriages and was googling the condition. Maybe you will still receive this message, if not, someone else might find it useful. I was especially moved by your tragic story of the misjudged diagnose of baby Perry. My pregnancy story started 2,5 years ago. Until the 26th week everything seemed to be going fine. Apart of all day morning sickness i felt great. But during the 5th month scan a fatal abnormality had been discovered in our baby boy - a severe case of hydrocephalus. We decided to terminate the pregnancy. This was a very emotional and sad experience. After this it seemed I could not fall pregnant again. However soon I discovered, that I do fall pregnant, but each time I miscarry at around 3rd week of pregnancy. The last miscarriage which happened 2 months ago was different though - I felt very positively pregnant. At 8th week of pregnancy I went for the first scan... but only to discover the little one had died at 6th week... This was a definite signal to finally get all possible tests done and soon after I found out I have an autoimmune disorder with Antinuclear Antibodies being too high (antinuclear antibody titre 320). I am still not too sure how this can be treated. I am googling the options. I know there are bigger clinics in Australia and US which treat this condition allowing a successful pregnancy. But I currently live in Malaysia and clinics tend to be smaller here and have less specialists. The doctor at the fertility clinic I had my tests done admitted he does not have the relevant experience.

Apart of the uncertainty how to treat the autoimmune condition in pregnancy, another question comes to my mind - WHERE DOES IT COME FROM??? Could it possibly be the body's reaction to a traumatic experience like loosing a baby? Obviously doctors will say 'no' but but clearly it is something I developed after the first pregnancy. And my gut feeling is that my problems do have emotional roots.

all the best to all of you guys!

v.

[mariafresnel]

Vernisse,

Thank you for writing. I'm sad for you, and all that you have had to go through to realise your dream of having a baby. Please, know that there are possibilities, and that with a lot of positiving thinking, the right medical team, and the right diagnosis, falling pregnant and going on to have a live healthy baby, may really be a dream that can happen.

As you know I experienced a medical tragedy mis diagnosis, then 4 miscarriages. I went to several obgyn before I used a three pronged approach.
1. Natural Fertility centre to help me get my body(inside) to be the best it could be to nurture a conception.This included getting the right vitamins and minerals (according to blood tests identifying my deficiencies), chinese herbs, acupuncture to help the blood flow through to the uterus. I had weekly acupuncture visits to ensure that my uterus blood flow was in top form.

2. I found a fertility expert at Sydney IVF to help me manage my pregnancy. There is a team at Sydney IVF dedicated to people who have miscarried. They know how to help people just before they conceive and immediately after for the first three months. In my case, I had to inject my self every night for the first trimester to get around the antinuclear antibodies. The problem with the ANA, is that it clots, and does not allow a placenta to form, thus resulting into a miscarriage. The drug I had to use was Clexane, it is used to thin the blood, so that the placenta had the best opportunity to form. My weekly visits to the IVF centre meant that they were taking bloods to check my HCG level, and that it was increasing, and that my Progesterone levels were also increasing. Both HCG and Prog, have to demonstrate an increase in order to manage a successful pregnancy. The benefit of weekly bloods was that in the event my progesterone was low, the doctor would prescribe an injection of progesterone (for some women a pessary which is inserted).

3. I found an obstetrician that was empathetic to my history, and I described myself as a 'high maintenance' client, and that I would need a lot of attention because of the losses, and that I wanted to know that someone was on my side. All in all, the combination of the above, allowed me the opportunity to provide for the best outcome. If Ihad not changed anything i.e. not go to IVF, not take vitamins, not take clexane, not do the acupuncture, I think that it would have resulted in my 5th miscarriage. So my thinking was 'more of the same, will give me more of the same, so something had to change to have a dramatic difference'.

As far as where ANA comes from, I don't know, but once you find out you can't change it, it's in your blood. My titre was about 420.
Vernisse, please let me know if you would be interested in anything further please let me know. Thinking of you, for a very bright and productive future.....dream of the possibilities, and let the possibilities, become your reality.xxxxx

[vernisse]

Thank you so much for your reply! It means so much to know I am not alone. When I first lost my baby, there was't many people around me with whom I could talk about it. How can you explain how it is to give a birth when you know that the baby is going to die. How can you explain the feeling of holding the miniature dead body in your arms, a miniature palm on your finger while saying hello and goodbye at the same time. My heart bleeds every time I think about your Baby Perri, because I can remember my own baby and you have been through so much more difficult times.


I read your message and previous posts very carefully. I took notes. I want to make informed decisions when finding and choosing my doctor. You are absolutely right, it must be a person who will care and who will be on my side. When will doctors realise how important the psyche is in treatment!? This applies to all disciplines, but ESPECIALLY to fertility treatment. In fact I read yesterday that in Japan and some European countries the first treatment which is offered to recurring miscarriage women/couples is counselling and therapy!


Yesterday I received a medical opinion from a reputable doctor in Poland (where I am from), that my antinuclear antibody values are not that high. He says that of course it can be treated medically. He still wants the kariotype results from my and my husband's blood. I will also look for acupuncturist and try to find a therapist, as well as research about the appropriate diet and herbs (maybe will look for a good Chinese doctor). In fact I am not very much into medication, but in this case I don't dare to take any risks and rather combine all possible ways. I still believe that the most important is the mindset, but I think I've already made a progress by taking actions and genuinely believing that I CAN BE PREGNANT AND HAVE A HEALTHY BABY :) Thank you soooo much for your support! I will keep you posted - all the best to you and your family :) xxxx

[nataliewattam]

hi vernisse ,
i am sorry for your losses but feel i can possibly give u some information , i was randomly searching on google about antinuclear antibodies as im considering a second pregnancy in the future ..
anyway im from the UK so not close to you but you say you are polish so this is not to far from here !! in 2009 i had a miscarridge then again another one and two more in 2010 i was seen by nhs ob/gyn expert who did all relevant tests and checked for adnormalities and was all normal , apart from being ana positive with a speckled pattern dont ask me the titre i aint got a clue !!! lol anyways he did not think this was the reason for miscarridge , i had my fourth miscarridge and thought enough is enough so i started doing some research and come across dr shehata a fabulous ob/gyn in london he runs the misscarridge clinic in london harley street , we booked to see him privately and after one look at my blood work he said he could help , we started his programme i had to take steriods (pred) baby aspirin and hormonal pesseries for the some vitamins before conception and for the first 12 weeks , and now i have a beautiful baby boy who is 6 months old , you may wonder why im telling you this well like you probably do spend hours trowling the net for women in your shoes reading the success stories , and wondering when it will be your turn , it will be one day i got there in the end , i hope i have helped give you some hope if u want more info im happy to chat over email or something ,,

dont give up

natalie xx:)

[felicita]

This is going to be a lesson about the immune system, since that's where ANAs come from.

The immune system is quite complicated and beautiful. It is made up of the WHITE blood cells. (Red blood cells have nothing to do with it.) There are many different types of white blood cells, each with their own specific roles to play.

For ANAs we need to know about B cells (and a little bit about some T cells).
B cells make antibodies.
One function of antibodies is to stick to nasty things like bacteria. Sticking antibodies onto a bacteria flags it as something that needs to be destroyed, and other parts of the immune system come along to do that.
Another function of antibodies is to physically get in the way, like a bumper bar on a dodgem car. Your antibodies to the tetanus toxin physically block the toxin from binding to nerve cells so that it can't do any damage before it gets cleaned away.

Every B cell makes an antibody to just one target. So the B cell that sees part of the tetanus toxin doesn't recognise anything else as its target. It doesn't recognise bacteria, viruses, or even a different part of the tetanus toxin. In order to make sure we can fight off many different targets, we need lots of B cells, each one able to recognise something different to the rest. Sometimes it's described as being like a lock and key. Every B cell has a different key and keeps trying to find its matching lock. By vaccinating we present the immune system with things we want it to recognise, the cells that are able to see the vaccine components (match the correct lock and key) multiply and mature into effective fighting cells, and cells that aren't able to see any vaccine components are unaware that anything has happened. So after a vaccine we now have lots of cells that can fight a particular disease if it ever comes along. An effective fighting B cell makes lots and lots of its antibody and dumps it into the bloodstream, or breastmilk, or intestines, or wherever else you've heard antibodies mentioned. Some B cells go your entire life without ever seeing their target, so they just quietly continue to wander around your blood and lymph system minding their own business and doing nothing.

The B cell keys are created randomly. They have the potential to recognise just about anything. This means our bodies need to use a couple of methods to prevent autoimmune diseases caused by having B cells that recognise parts of our own bodies.
The first method, is that immature B cells are given a little test to see if they react to your own body. If they do react they are supposed to die. Our bodies know that if they set this test too hard then all the B cells will fail and die, so the bar is set much lower. It's actually so low that quite a lot of B cells with keys that fit things in your own body are let loose. These are potentially autoreactive B cells, i.e. they have the potential to react to your own body.
So then a second method needs to make sure the autoreactive B cells don't start causing trouble when they match their key with the lock. Since the lock for the autoreactive cells is a part of your own body, it's only a matter of time until they find their match.

So if a B cell finds its target, it is not allowed to just go ahead and attack. It has to go to your spleen or to find a lymph node and ask another cell for permission to become armed. The cells which give B cells permission to fight are CD4 T cells. T cells live by the same sort of lock and key recognition system as B cells do, but the autoreactivity test for a CD4 T cell is much, much harder to pass.

Even though it's harder to become a CD4 T cell, some autoreactive cells still sometimes sneak through the system, and may then give a B cell permission to start attacking your own body. This can lead to autoimmune disease.

But there's another, more accidental way, for B cells to get permission to attack your body.
So, we've got a B cell that had matched its key with a lock, and so it heads off the the spleen or a lymph node for permission to become armed and fight (i.e. to make heaps and heaps of antibody). In the spleen or lymph node it doesn't find a correct T cell to give it permission, but it happens to be standing right next to a different B cell that is receiving fighting permission and overhears it and thinks it now has the OK to go and fight. This is called the bystander effect. The autoreactive B cell was being kept under control, but because you happened to have another infection happening at the same time (e.g. a common cold) that had B cells correctly seeking fighting permission, it overheard someone else's instructions as being permission for itself.

The antibodies made by B cells are referred to as anti-whatever antibodies. So anti-nuclear antibodies (ANAs) are antibodies against nuclei of cells (where the DNA is kept). Every cell (except red blood cells) has a nucleus, and so are potentially a target of the antibodies. Fortunately, under normal conditions, antibodies have a hard time getting inside cells to where the nuclei are, so don't cause much problems. When a cell is dying or damaged, it won't keep its "walls" intact properly, so then an antibody has a chance to get in and stick to the nucleus.

Having ANAs might indicate that your permission systems don't work properly, either because your B cells are too eager and don't wait for proper permission (e.g. as happens in lupus), or because your body sets the T cell test too easy. But it most likely to just be a one-off bystander effect accident.

Now remember back to the functions of antibodies, being to stick to nasties and label them for destruction. There are small chemicals in the body (complement proteins) that recognise when antibody has stuck to something and these chemicals then start causing inflammation, and recruiting other parts of the immune system to destroy the nasty. One of the effects of inflammation is the tendency for blood to clot.
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When the placenta (or chorionic villi) is first implanting into the uterus, as well as all the cell division and growth happening there will also be some cell death or destruction. This cell death can give the ANAs a chance to cause trouble. If they find a nucleus they will start causing inflammation. If they start causing inflammation there will be blood clots. A teeny-tiny new placenta is entirely for the extraction of goodies from mum's blood to give to bubs. If you start blocking the pipes with blood clots it's not going to work and bubs will die. The smaller the placenta (i.e. the earlier in the pregnancy) the more susceptible it is to the bad effects of clots. Once you've got a big healthy placenta it doesn't matter so much, because if you get a blood clot over there you can still use all the placenta over here to nourish bubs.

Treatment for autoimmune disorders that affect TTC include steroids and anti-inflammatories (like aspirin) to make it harder to start an immune response. This won't be as effective against antibodies, because the problem antibodies have already been made, they're just hanging around waiting to cause a problem (although they believe they're helping against the "nasty" nuclei).
So the next treatment is to make blood clots no problem. Heparin is a blood thinner, which means it helps to stop blood from clotting. Clexane and Fragmin are types of heparin with fewer side-effects than whole heparin. (Just like aspirin has fewer side effects than willow bark.)