Hello! My name is Julia, I`m 37 years old and I was diagnosis this syndrome two months ago. On April 27th was born my second child, and I was never OK again after that. When he was two months old I began with joint pains, and then muscular pain and extreme weakness. I saw a lot of doctors, who thought that its was something like Lupus, but not very hard. Finally I was feeling terrible and went to a great Hospital here in my country, Argentina. There they took me X rays from my lungs and then a CT, and like that I added the fibrosis to the other symptoms. After that I was in the Hospital for a week, they do me a kidney and a muscular biopsy. The also find the Anti Jo positive. Now I`m with prednisone and ciclofosfamide. I´m feeling perfect, but I know I will have to deal with these for a long time. In a few days they will take me another CT to see if my lungs a improving or not. We are so few!!! I hope you write me, so we can talk about these strange disease. I speak Spanish, so I hope you have understood my english!!! Best wishes Julia

Hello Julia, first of all, welcome to our community but it is also sad that someone else has this disease. Your experience has been the same as mine (although I have no children) I was diagnosed with Lupus in the beginning, like you, and had the same symptoms. I was put on the medication for 4 years and stopped taking it after that and I was quite well for a long time, although I had occasional times when I felt unwell but I still managed to go to work. Now, I have been told that I must continue the medecine for at least another 10 years, also have the antiJ0-1 positive. I won't go into too much detail about my symptoms as I'm sure that you have read many of the posts that are on this site. May I congratulate you on your english, it is very good. I wish you well. Best wishes Carol

Hello Carol!!! Thanks for welcoming me... Its so good to talk with other person with this strange disease!!! I have read the posts in the site, and I see that you have been living with this for several years. I´m new in it, and obviously I´m hoping to get in remission, but thats not so likely, is it? But, well, at least you can feel OK for long periods of time, don´t you? I want to ask some questions for you all: HOW DO YOU THINK YOU GET ILL? WHERE YOU DEPRESS OR HAD OTHER EMOTIONAL SYMPTOMS? I was very bad, also before I get the fisical symptoms. My mind was very dark and I felt I was dying, even before i had a single pain. Of course I thought It was postpartum depression, but I feel it was part of the disease. I´m normal in an emotional level since I began the treatment. Well, I know Its hard, but if you want to share, I wait for you answers... Thanks so much, Carol. I hope you are feeling better of that infection.. I send you a kiss. Julia

Helo again Juia, In answer to your question about depression - I have often looked back to when I first became ill and thought it had something to do with stress. My mother was very ill at the time and had to be put in a nursing home and I felt very very afraid and worried for for her. At the same time my husband's son got married (I haven't had any babies as I had a ready-made familly with my husbands children) and we know that it can also be a little stressful with all the arrangements to make. After about 4 years on medication I seemed to be in remission for a long time, until 2007 and also, at that time I was worried about my sister who has cancer (she lives far away in UK) so who knows whether stress plays a part in this disease. I would like to mention that with the Prednisone it can cause bone loss and the calcium and vitamin D did not help me so I have to take another bone strengthening medication called Protelos 2 (strontium renelate) Also I must have 6 monthly extensive eye examinations because the Plaquenil can affect the retina. I don't know what you think but it seems that I am always going to see the doctor or going to the hospital etc. Thank you for your good wishes. I hope that some of my answers help. I send you a kiss too. Carol

Hi Carol!!! Well. for I can see in your story, there were clear stressful events going on in your life every time you got sick. I believe they are not the cause, but stress can trigger the crisis, isn´t it? It was a very stressful moment too, when I get sick. I was very pregnant when I moved, and It was a big change in my life, even I live very close to my previous home. But the most stressful moment was the delivery of my baby, and I always thought that was it, I get sick during that night. I was planing a non-intervention delivery. In vertical position and without epidural. I didn´t believe in pain. Well, I was wrong, and SO SURPRISED!! LABOR PAIN DO EXISTS!!! I felt very disappointed for not being able of have a transcendental, yoga-like, delivery, but the truth is I scream during all the process, and finally get an epidural. I used to be very hard on myself. I think being ill make me change that. I´m not in charge of the world any more!!!! I´m also having my eyes checked, because my doctor will give me plaquenil again starting tomorrow probably (I´m seeing her tomorrow) It was the only drug I was taking before the diagnosis in December... Well, Carol, Thank you so much for reading and sharing!!! Kisses Julia