Has anyone else been diagnosed with this condition yet? It's hard to come to terms with it as there is no-one to compare notes with. With the treatment that I am receiving things have improved but I don't relish the thought of remaining on prednisone and plaquenil for the next 10 or more years as I indicated by the specialist.

Bonjour Deaks, j'ai vu que tu étais française et je suis tombée sur ce forum par hasard. J'ai 26 ans et j'ai été diagnostiquée du syndrome des antisynthétases il y a 1 mois, un peu par hasard, suite à la perte de mon bébé au mois d'octobre. Pour le moment la maladie ne s'est pas encore vraiment déclarée si ce n'est que la fibrose pulmonaire a commencé et j'attends les résultats de la biopsie musculaire que j'aurai dans 1 mois.J'ai quelques petites douleurs musculaires diffuses mais tout a fait supportables et mes mains sont gercées constamment depuis plus de 10 ans ("mains de mécaniciens" comme ils disent sur internet) Mon médecin attend d'avoir tous les éléments avant de me proposer un traitement. Peux-tu m'en dire plus à propos de cette maladie ? Peux-tu me parler du traitement que ton médecin te propose ? Désolé d'écrire en français et de ne pas en faire profiter tout le monde mais même si je le comprends, j'écris très mal en anglais...

So i will try to translate in english for all the members... Sorry for my poor english :) I am 26 years old and I was diagnosed by the syndrome of antisynthétases 1 month ago, a little bit accidentally, further to the loss of my baby in October 2008. For the moment the disease did not still really declare itself except that the lung fibrosis began and I wait for the results of the muscular biopsy I've just done. I have some small diffuse muscular pains but everything made bearable and my hands are cracked constantly for more than 10 years (mechanics' hands as they say on internet) My doctor waits to have all the elements before proposing me a treatment. Can you say to me more about this disease? Can you speak to me about the treatment which your doctor proposes you? Sorry for my poor english....

Hello Deaks, I would give you some news. I had the results of my biopsy which are only confirming the diagnosis. My doctor seems a little bit hesitating for the continuation of things so he has organized a meeting beetween me and a doctor who knows better this type of pathology. this is the professor Chérin of the pitié salpétrière hospital in Paris. I will see him in june. Do you know this doctor? Besides, it would seem that the disease is finally connected to the loss of my baby and a pregnancy can accelerate the process of the disease. So even if I have not begun a treatment yet, it is formally forbidden to me to be pregnant for the moment. Unfortunaltly our community grew up, and I would like to have other testimonies of persons who have this disease. Were you already pregnant since the beginning of your pathology ? How long lasts the treatment ? What are the effects of the treatment on the everyday life ? What are the effects of the desease on the everyday life? Thank you for your answers. And you Deaks, how are you ?

Bonjour Twig17, I hope that when you see the proffesor Cherin in Paris that he can give you some better news as he obviously has more experience of this disease. I think that "ordinary" doctors just have to use there instincts and do what they think is best for you (i,e, medications and frequent examinations and scans) I thought, perhaps that the loss of your baby was connected to the disease, which is the worst thing of all. The doctor who is in charge of ny case at the hospital says that I must continue the treatment for at least 10 years??? No I was not pregnant when I had the disease (even in 1991 when they thought that it was Lupus. J'ai 64 ans maintenant) Je prend le medicament tous les jours, matin & soir avec manger. Je doit preparer les medicaments au tour de les repas. J'ai encore de antibiotics pour l'infection de poumon. J'espere que s'ameliorer bein tot. Je m'excuse mon mal francais j'ai un ordinateur anglais aussi. Bises Deaks

Hello!!! Cecile, I want to tell you that I get sick right after pregnancy. I have a very good pregnancy, although I was having heparin shots every day, because I have been diagnosed with Antiphosfolypid syndrome (It does not spell like that, but Spanish is my first language and I do what I can with these medical terms) May be your problem with your baby has also something to do with coagulation. You have to ask your doctors about it, so you can prevent it in your next pregnancy. Its obvious I have a tendency for authoinmunity, but After the baby (Daniel) was born was when I get really sick. I believe Its related to the pregnancy, maybe Its also your case. I want to answer about the treatment. I don´t know how long will it last, but you feel OK immediately. I´m working and taking care of my children with no problem at all. I´m feeling great!! The medication can blow your face and abdomen, and, in long term, you can have ostheoporosis, so you have to take also calcium. On my everyday life, I don´t feel any side effect right now. Hi Reidi!! I wold like to read Norman Cousins´s books. Which one do you recommend me? Carol!!! I writhe you in the other post!!! Best wishes Julia

hello everybody thank you for all these answers. Julia, nice to meet you ! Your good pregnancy give me some hope for the future.It's very difficult for me to accept the loss of my daughter Maïa after 6 months of pregnancy.Besides, the doctors don't authorize me a new pregnancy for the moment. So i must be patient until in june when I will meet a specialised professor in Paris. About my emotionnal estate, I feel very well until october 2008 even if i probably have this desease since 10 years ago. But I am worried of sadness that i have at the moment can have some influence on the disease. However, it's good to share our experiences of this strange desease. Carol, thank you for your answers too. Your french is better than my english ! It's hard for us to imagine a "10 years treatment"!! I hope you are feeling better of your infection. I send you a kiss Julia, Carol and everybody I wish we feel well very soon. Cécile

Hi Carol!!! I´m so sad reading your story. I can´t imagine what you must be feeling. Of course you will have another baby, but now is the moment to get well. I hope you can start your treatment and began to feel better very soon... I´m curious, Why do you think you have the disease since 10 years ago? I send you a big kiss... Julia

I too went through the sadness of it all and still get a little emotional 2 months into it, but not as bad as that first couple of weeks. This goes away when you shift your mindset from defeated to f@#$ this I am going to fight it and beat it. As soon as you start seeing positive results and stop reading about the negatives it becomes easier. I for one thought that I may have handled it a bit better at the beginning and am now just doing all I can to find a solution to this bullshit disease. Chin up to all and lets hope a positive mind leads to a positive body. Not to mention good food.