Tag Archives: methotrexate

6.5 weeks could prove…

[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.


Tags: , , , , ,

Weaning down not a good idea after all

I tried, I really, really did. I mean, seriously, who wants to have to take meds to survive? I was trying to eventually wean down to 1 pill. I was down to 3 pills every Sunday from 7 when I started, but after 1 week of trying to go down to 2, I felt like I was on the verge of getting chills. It is hard to relay exactly what the feeling is, but it feels like being very worn out, exhausted, fever and an inability to carry out your daily life. It feels like when a flu is coming on and the body starts to ache and a headache follows. I could not tak ethe chance of the lymph nodes swelling up. So, I went back up to 3 pills and this where I will stay. 3 pills each Sunday is o.k. with me, forever. I do not see myself ever really going off. I can not bear to ever relapse and begin the whole steroid regime and very high methotrexate series again. I feel so sad when I remember the vomiting and pain and severe chills and then I was saved. No, not by a religious moment, but by the best doctor in the city. He knew, and I knew what I had, but those poor unknowledgable medical students had no clue. So, No. No. No. absolutely, no way will I ever go off. I am happy just where I am, thank you. Which reminds me, I need to go for some labs on my liver tomorrow. Thank you all for checking in on me.


Tags: , , ,