Hi! How are you doing? It have been a long time since someone wrote. I want to know how are you living theses days and dealing with the disease. I am feeling fine, but having some trouble to low the prednisone doses. I am taking 40 mg now and 100 of ciclofosfamide. Carol, have you seen your doctor? Tell us about it, please.. Best wishes for you all... Julia

hello julia and everybody ! I can give you some good news me too. I'm begin the treatment one month ago with prednisone 25 mg/day and imurel at 100 mg/day (this is an immunosuppressive as azathioprine). This treatment is ok with the pregnancy and the doctor said i will be pregnant in october if i would. i hope i will tolerate Imurel as well but, for the moment my blood test are good. I meet a lot of doctor since 4 months and now, i know this is the disease which killed my baby. However, i am feeling better since the beginning of the treatment even if i am always worried about the long term effects. But, at the moment, i'am in confidence in my group of doctors and i think it's very important. The sun is shining since one month and it's really great to use the good way of life. Give me some news everybody ! I wich you feel fine, kisses from France Cécile

Hello Cecile!!! I m so glad reading you are feeling better, and you have a treatment. It s a great news that you are going to try to conceive again. I had heparin in my pregnancy, but I wasn`t sick at that time, or at least; I didn´t knew, I thought it was coagulation problems only. I know you can use prednisone during pregnancy without harming the baby. I wish you can have a healthy baby very soon. Have the doctors seen your lungs? What did they told about them? Mine are better, but Im always worried!!! Many kisses Julia

Hello again everyone, I'm pleased to hear that you are feeling fine Julia. It is always a worry when you take strong medication as to the long term effects of it but I have taken prednisone before, for a long period of time with no bad effects and have now taken it again for nearly 2 years. I worry more about the Plaquenil, because of my eyes but so far so good. I hope that you continue to feel better and keep that positive attitude that you seem to have. Cecile, I am so pleased to hear your news and I am really glad that you should be able to conceive while taking the medication. I think that having confidence in your doctors is really important. I have had another chest infection recently and I will be having a lung scan soon before seeing the lung specialist in August and then I see the other specialist in October. Hopefully all will be well, Kisses and hugs to all, Carol

Hello Deaks and Julia, it's good to read you ! My lung infection seems to be stable so the doctors aren't worried for the moment. But i will have another lung scan in january to check it. However, i have just begin the treatment and i will see my doctor in august to make a point about the evolution of the disease. For the moment, prednisone is like a miracle but, like you Julia, i have some troubles to low the doses. The first week of the treatment i was really tired with imuran but now, my body seems to be ready to get the medication. I 'm loosing much hairs as i usually does but not enough to be really worried. Deaks, i was worried about your chest infection and i hope all will be fine with your lung scan. Many kisses, Cécile