I?m new. My sad story how I got the diagnosis

[Emics]

Hello everybody. Thanks a lot for supporting and writing in this page. I am 40 and I am from Spain. My username, Emics, comes from "En mi coraz?n siempre", which means "Always in my heart".
Why? Because I discovered I had Sjogren?s disease because I lost a baby. In my 20 weeks ultrasonography they saw a very severe bradicardia (the heart was beating very slowly), but the baby was perfect otherwise, there wasn?t any physical defect in the heart. They analised my blood suspecting an atrioventricular block due to an unknown autoinmune disease and very high levels of anti Ro 52 and Anti Ro 60 (2100 IU/ml and 7200 IU/ml, my Godness, is it normal? Any of you have such a high levels?).
Some of you will know that Anti Ro, the same as it destroys our salival and lacrimal glands, destroys the electric conduction system of a fetus that is growing, since 14 week until 28 weeks. Please, this is important to know if you have plans of having a baby. Most of the doctors don?t know this.
Then a nightmare came. Scans every other day, stress, blood samples, amniocentesis, doubts, second a third opinions in several hospitals.... the prognosis was poor because the damage was early and wide. Sadly, we lost our beloved girl one month later, I was in my 5th month of pregnancy. I don?t know if you know how hard is this situation. I have started to do a normal life some weeks ago, and I am being assesed for first time to do the "official" diagnosis with an internist.
Only 1-2% anti Ro positive have this risk with the fetal heart, in a second pregnancy that risk is higher: 20%. I would really like to have children but I am in panic with this, I would not bear to repeat this, I can?t. I am desperate and I don?t know what to do.

Another thing that is important you to know of me. I am a doctor. My field is gynecology oncology. I told you before that I didn?t expect to be anti Ro positive. Well, that?s not strictly true. Since I was 34 I had eye sicca symptons, I had severe corneal erosions. I visited some ophtalmogists (colleagues in different hospitals I have worked so far), I suggested I had Sjogren but they even "laugh" (you know! we are doctors! don?t believe you have everything you read!) and they told me I was too young to have that, and you know, air is dry in the hospital and blah, blah, blah.... I had several episodes of corneal erosions which forced me to stay at home for a week, but you know, that?s normal... My right parotid gland was puffy and painful, but you know, that is normal sometimes... I imagined I had Sjogren, but you know, everybody,even in Medicine studies tell you that is a "minor" autoinmune disease, so I thought, "well, when I will be 50 I will be a really Sjogren person, now with eyedrops you are more or less OK, so let it be". But of course I didn?t know anti Ro could produce atriventricular fetal block. Anybody told me. Well, my colleagues completely ignored me about my sicca symptoms, and I operate gynecological cancers, I don?t know about autoinmune diseases neither fetal arrythmias. My God.

This is my story. I have many doubts that I am trying to solve reading scientific papers, but also reading this forum, it is very useful. Thank you so much to share your time and experiences.
Now, one of the things that obsseses me is to reduce my levels of anti Ro. Because the higher they are, the more risk I have to have a baby with this problem. Now I have 987. I am on hydroxichloroquine some weeks ago (200 mgr/per day).
Any experience? Does the HCQ dropp off your levels? Any other drug or action (yoga, sports...)?
Thank you so much for your attention. Kisses. Emics.

[eye2dry]

hello Emics.

I am sad to hear about your first pregnancy turning out the way
that it had. I can only imagine your sadness and fear of another
pregnancy going the same way. Have you made an appointment to see
a high risk pregnancy specialist? I am not sure how the medical world
works in Spain.

Here in U.S. if you meet certain criteria you can be diagnosed with sjogrens.
I would say by your positive lab results, dry eyes...the pregnancy you
had...there would be no doubt you have it.

Yes, it's true in my case I had symptoms that drs just diagnosed my eyes
as allergies...ocular rosacea. At 52 my labs were finally checked for
autoimmune by family dr and my ANA, SED RATE, RF were sky high and
I was positive for SSA & SSB.

I take Plaquenil 200mg twice a day.

I have no idea how to lower your levels of anti-Ro....someone else will have to
give you info on that. I had my children early in life so I did not experience any
pregnancy difficulties. I am now 58 and was dx in 2010.

Welcome to this site and I hope you get a lot of helpful insight and information
from us.

shelly

[Joe S.]

welcome to the forum. After over 7 years, I was diagnosed with SICCA by symptoms alone. I am so sorry to hear about your loss. I have no suggestion for how you can recover to a normal pregnancy.

[Emics]

Thank you so much Shelly and Joe. Sorry for my English, but it is not my maternal language. I would like to say so many things... but I suppose issues will emerge step by step in this forum. It is heartwarming meeting people with the same problem, although not exactly about pregnancy problem.
Yes, Shelly, I got in touch with high risk pregnancy specialist. During my lost pregnancy and if I want to try in the future, they are prepared. But despite many posibilities found in papers (HCQ, steroids, immunoglobulins, plasmapheresis...), any of them avoid this problem. It seems that HCQ lowers the risk but it is based in a few cases. It is a very rare condition and it is not easy to reach a conclusion.

I just had the Sjogren diagnosis "official" some weeks ago, but I am reading about the disease. I wish I will be of help too.

Thank you very much.

[Carolina]

Que lastima terrible, EMICS. 

What a terrible way to find your Sjogren's as well.  Todo simpatia.

Todos tenemos mucho que aprender de estas condiciones inmunologicas.  Mi esposo es profesor de inmunología, y me ayuda comprender mis condiciones.

You have the resources and the abilities to understand your condition and what you can do to help yourself have a safe pregnancy and delivery.

Continue asking for information, and find the best research Immunologists/Gynecologists who can monitor you and help you. 

Most of the medical professionals do NOT know much about the Immune System, Emics.  It is far more complex than most Rheumatologists and Immunologist realize.

The problem of pregnancy loss, with your specific test results happens to a small percentage of those with Sjogren's Syndrome.

You must find doctors you trust, and you must keep a journal of your symptoms on a daily basis.  This will help you as you go forward.

And learn to listen to your body.....not easy for doctors to do!


My problem is NOT autoimmune disorder, rather a disorder of my basic immune system, with damage to my body done by other biochemicals, probably cytokines. I actually have a Primary Immune Deficiency Disorder (CVID) and receive IVIG every 4 weeks.

I do not have Anti-Ro, and had two uncomplicated pregnancies, so I have been fortunate.

bienvenidos, Emics.   

Lo que siempre dice Joe S:  Respira!  Recuerda a respirar, y deja quietar su mente.

Abrazos, Elaine

[Kathy57]

Dear EMICS,

I am so sorry for your loss!  My heart goes out to you.  Im 59 and had my children before I turned 30.  My symptoms did not start until my mid forties. 

I just have one comment.  My doctor prescribed 400 mg of Plaquinil for me (200 mg taken twice daily), and just recently cut it down to 300 mg, daily.   Part of it is based on my weight.  Are you just starting on the Plaquinil and were they planning on maybe increasing your dose?  Would that help?

I don't know.  I love what Carolina told you.  I believe that you will figure this out and experience success.  Meanwhile, you will never stop loving the little one that you've lost.

You are in my thoughts and my prayers.  May you experience love and peace this Christmas.

Kathy

[Deb 27]

I am so sorry for your loss Emics. That is a horrible way to find out you have Sjogrens. Have you been to a teaching university or center of excellence there for Sjogrens or Rheumatology along with high risk obstetrics?

I was antibody negative for Sjogrens but did have a positive ANA. It went away after about 8 months of plaquenil and low dose prednisone. I hope with your knowledge of the medical system you can find the right Doctors who can help you with a successful pregnancy. Best of luck to you. I wish I had more answers or experience for you.

[Emics]

Thank you very much to everyone. I am scared but I would like to try it again. I am on Hydroxychloroquine (Plaquenil), and being checked by an internist,  then by a high risk pregnancy specialist... I will tell you. Now I need to relax, to be sure what?s happening with my inmune system, and to make plans. But it is sure that I have Sjogren?s.What it is very strange is that I have only sicca symptons, nothing of fatigue or another symptons you tell here. Of course I feel tired some days, but I always think it is because of my stress or my job. Maybe it is because of Sjogren?s, you can never know.

Thanks a lot. I read you all. Hugs from Spain.

[LilliaT]

Hi Emics,

I am so, so sorry for your loss too.  I can't imagine how devastating it has been for you.  You sound very strong and resilient, and I hope very much for the best for you.

I had my daughter before I noticed any symptoms of Sjogren's (although I've had dry eyes since I was a teenager, so I guess something was brewing a long time ago).  However, I have a friend who also has Sjogren's, and she had her child well after her diagnosis.  I'm sorry that I don't know all the specific details of her medical situation.  I do know that she was diagnosed with Sjogren's pretty early, because there is a history of autoimmune issues in her family.  She dealt with some health issues (I think mostly unrelated to Sjogren's, although I'm not sure) a while back, and for a while she wasn't sure she'd ever be able to have kids.  But she now has an adorable 5-year-old who is bright, headstrong, and full of personality. 

I believe she had an obstetrician who specialized in high-risk pregnancy cases.   I don't believe she was on plaquenil during her pregnancy; I seem to remember her mentioning that she had tried plaquenil years ago but was one of the rare cases to develop retinal issues after only a short time on it.  Her Sjogren's symptoms are relatively mild so far, and she mostly manages through diet for now.

It sounds like you are doing all the right things and that, with your medical background, you have the best possible chance of a good outcome.  I wish you every joy and happiness possible going forward.

[irish]

Emics, I am so sorry for your loss. This is an example of how hard it is for us to get diagnosed. I know that doctors are not trying to be mean, but our symptoms are so common in some ways that we don't seem to make enough of an impression. The thing is we know down deep in our gut that something isn't right but it seems like we are not given the chance to be as verbal as we want.

I hope that you can come to some decision in the future over this situation and how to deal with it. I was very ill with my 3rd pregnancy and had no clue what was going on. I lost weight, and had so many ailments that years later I know were from Sjogrens. My mother in law told me years later that she did not think that the baby or I would survive the pregnancy. I did not know that I looked that bad. I know that I felt that bad though.

I would imagine that you will be an advocate for pregnancy and Sjogrens in the years to come and people will be so lucky to have your expertise and knowledge. Continue to be strong for so many women who have no clue. Thank you and God Bless. Irish           

[SjogiBear]

So sorry to hear your story and deepest sympathies for your loss.  My story isn't exactly the same as I had earlier pregnancy loss which was deemed to be as a result of having anticardiolipin antibodies (APA).  When I was treated with aspirin I did eventually carry to virtually full term although I had great difficulties getting pregnant in the first place (it took four years after my last miscarriage and then I never managed to get pregnant again).  I too am anti-Ro positive and it is just down to luck that my baby was OK as despite knowing this fact, I was not routinely scanned and monitored once I had been discharged from the Recurrent Miscarriage Clinic at St Mary's London (under Prof Regan).  She has just turned 11 and has just been diagnosed with coeliac disease and I suspect she may eventually also have sjogrens.

Have you read this relatively old article about using immunusuppressants to reduce the chances of CHB? (Sorry I cannot do a hyperlink as it's a pdf file - I'm sure you will find it anyway.)

Successful preventive treatment of congenital heart block during pregnancy in a woman with systemic lupus erythematosus and anti-Sj?gren?s syndrome A/Ro antibody
Chung-Han Yang, Ji-Yih Chen, Shih-Ching Lee, Shue-Fen Luo
Division of Rheumatology, Allergy and Immunology, Department of Internal Medicine, Chang Gung Memorial Hospital, Tao-yuan County, Taiwan Received: August 6, 2004   Revised: December 9, 2004   Accepted: February 1, 2005

I don't know if you have also considered 'alternative methods' as it's difficult to find scientific proof of efficacy.  There seemto be many anecdotal claims for following the autoimmune paleo protocol for example - I'm sure some others on here may be able to give you more information about this - I have not tried it myself.

I wish you all the very best - I would just say don't give up!  I had to fight to get my girl but I got there in the end!

[Emics]

Thank you very much for your words, Irish and SjogiBear. Yes, I am reading many articles to understand what happened to me and to assess my risks and treatments if I try in the future. It is a hard situation. I am trying to change my lifestyle too, diet and so on. I think everything it is important, and I can?t deny that during my first trimester of pregnancy I was very stressed because of professional issues. I always think that maybe that was the reason I had so high anti Ro titres in that moment. Who knows.
I am learning useful things and points of view here. I am very grateful.