[Huge Sigh]…scared…but I feel must try one more time…so scared… I feel like running to the MTX bottle for the dose, but at the same time, I know I must try. I ask myself, why am I doing this? Would it kill me to stay on a super low dose? What’s the big deal if I keep taking the MTX? My labs are good. But they have always been good when I was pulled off the MTX before. So, I don’t regard good labs an indicator to stop meds. MD: “Wow! Your labs are awesome! Lets pull you off the MTX!!” Then, WHAmO! 6.5 weeks later hello stills monster of the black lagoon.
I didn’t take my MTX this week. Mondays are my night. Have I been staying on MTX even though the dose is so low, my body may not even know I take it? If this true, placebo is great. Fear factor in play. Fear center stage. Fear take a bow. The repercussions of a flare are tremendous. My mind is compulsively thinking about not trying this stupid antic. There are some really bad things that happen to me when I flare that I have not written about. It’s happened twice. I have had surgery twice. Thinking about the possibility of going through surgery again scares me so much I am obsessive about it. My husband feels that if the fear of a flare is so overpowering then why not stay on 1 pill forever? I guess it would be fine?? Tragic that this disease is so random and idiotic. 6.5 weeks from today could prove I was stupid for trying this. It takes 6.5 weeks for the MTX to leave my body completely. I will sleep on this tonight. If I can not feel safe going off then I will wait a while longer to feel when the time is right. I see the new Rheumy tomorrow morning at 10:30am. I hope she is sympathetic and has seen AOSD before. I dont want to be her experiment. I have heard she is nice and that she had good “health grades”. This is reassuring. Thanks for listening. Have a good night friends.
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.