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.

Daily Update

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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.

2 Comments Leave a comment

  1. I don’t know how to start. I don’t want to go into all about myself. You’ve done such a great job of building this site, but I haven’t had a chance to read a lot of it. I too have AOSD (Dec 15 2005).

    • Melissa, I know there is a lot to read in the blog. It mostly just started out as a personal journal to keep track of my symptoms, medication and the relapses. I needed aplace to vent. But I hope it is helping others somehow too. I hope you are feeling better and your Still’s is under control. Thank you for finding my blog.

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