I'm going rouge. I went ahead and dropped my prednisone dose to 30 mg as of last Sunday. I just couldn't find any good reason, in all my research & talking to people, why I needed to stay on 40mg for 6 weeks. I looked on that website I found when first was diagnosed (uptodate.com) and it confirmed that my taper schedule was way slow. It also said the faster you respond the faster your taper can be; they recommend 2-3 months, and/or a 1/3 reduction every 2-3 weeks.
So I'm taking matters into my own hands and reducing 10mg every 3ish weeks (which is still slow). Haven't decided how I'll tell dr. B yet. I don't even see her till June 8th.
This rebellious behavior is not about me struggling so bad on the drug that I can't handle it. Aside from the weight gain, which is annoying, I'm doing ok. But at this point, with me being in remission, I have to consider the long term side effects of being on high doses of Pred. It's just not necessary to do that to my body and I don't feel good about it.
I do, however, feel good about my decision. I feel informed & in control of my health. But I'm scared to tell my doc because I'm a pleaser by nature, especially with so-called "authority figures." We'll see if I can be brave come June 8th.
My next 24-hour urine is scheduled for May 29th. A few days after that I'll drop to 20mg. Wish me luck!!
2 comments:
Most people think I'm crazy because I chose not to take Prednisone to control my FSGS. But, after hearing my neph explain all the side affects I knew I wouldn't be able to stick it out and I thought it would be better if I never went on them than hate it and want to go off of it.. because you can't just go off cold turkey, you have to taper and I don't know if I would have the patience for tapering. I am the only patient my neph has that is not on prednisone.. apparently I'm rebellious too :-).
Hey Alisha!
I found your blog by Googling for FSGS, which I also have.
Argh. I hate Prednisone weight gain too, and looking in the mirror to see what actually looks like a different person! So weird and depressing. :(
I hope your next clinic appointment goes well! I had one yesterday and it looks like I am heading towards remission (woo!), so I will send some good thoughts your way. :)
Holly :)
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