Just an update, after careful consideration and discussion with my husband and 2 of his physician friends, who are not rheumatologists but other kind of MD’s, we have decided I will not stop the MTX this year, or maybe ever. The rational is that everything is going well, except for the minor flares that occur when I am overly exhausted, extremely fatigued. The reason is that after discussion, I learned that about 50% of AOSD patients never flare again, the other 50% have continued flares. Since I have flared in 2008, 2009, 2010 and twice in 2011, this could possibly be my situation. Every time I flare can possibly be different, per the Critical Care MD where I work. He told asked me not stop the MTX. He told me about several AOSD cases he has had over the years in ICU. I asked why he never refers consults the therapy department to provide therapy for these patients, since I see most every type of patient in the hospital? He said ” because they are dying, there is no need for therapy”. He said many of the continued flares can begin to attack other organs, lucky it only attached my liver these last flares, but next time…..? I can not risk this. We have decided to continue with MTX.
I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.