hello, i hope everyone is doing fine today. i need to know when antisynthetase syn. becomes active or is it always active? i have the skin problem which seems to be active most of the time but is under controll. but i dont know when the other parts are causing my pain. i also have a lot of other diseases. please respond, need the info

Hi Nanasix! There are so many variables with this disease. I have been in "remission" for about 5 months. Being, I have not had alot of joint pain or other problems severely so I consider that "remission". All I know is that the pain and discomfort does not totally go away but is worse from time to time so with my experience it is active at all times. Tiredness and extreme stress seem to trigger activity of the disease and make it act up. Rituxan and Cellcept has been a huge success for me, along with 5 mg prednisone. Good luck to you and hope you are in "remission". :)

ty for responding so quickly. i have not been able to start the cell cept due to the fact that i took a large amount of steroids, for a long time, that in turn rotted all my beatiful teeth. i have been trying to have them all cut out before i start supressing my imnue system. out of seven doctors i finally got all them to agree, but now the insurance co. are refusing to pay. my lungs are detorating fast. low oxygen ect. i finally got a marjor hosp. chapel n.c to do the surgery. i had complete hip resplacment in 4-9-10. almost passed away 2. so beening put to sleep for the teeth is very scary for me. i know with this stuff you must take one thing at a time. pray for me and i will keep you up dated, again thank you!

I was declared in remission for the lungs in December. I know that I am not having any muscle pain. I have pain in my joints, but I think that is from the damage of five years of this disease. If you are taking predniseone watch out for osteopenia. I have it. I am trying to reverse it. My scores are close but my overall risk is low right now.

well i would like to say hello to everyone, so hi! still trying to get my teeth cut out! started trying in jan. this year. my next hospital date is oct. 24. that might change who knows. have been on 10 mgs of steriods a.m and 10 at night. i am reducing that now to 5 a.m and5 pm. also been on strong antibotic sense july., as sooon as i finish one round, with in 7-10 days later the congestion is back. every time it comes back i have a much harder time breathing. rummy did do a throat culture today so maybe will know more in a few days. even with all that it has been a great summer. anyone out there that knows something else to try will be most greatful. nanasix

Hi Nanasix I was wondering how you get on taking your steroids at night. I went a bit crazy and was spending most of my nights sat up crying. I wanted to continue to breast feed and had to leave 8hours between taking my steroid and feeding for it to be safe for my baby. He slept through the night so I took it after his last feed. It was 60mg when I explained to the doctors what I was doing they were horrified and said that the steroids needed to be taken in the morning because they interfere with your Circadian Rhythm ' Biological clock' so I was up all night and asleep all day. Katrina x