Hello all of you! I don't know how many will remember me, but I'm sure a few of you will
I just wanted to drop a post and let you all know I am doing so great and it has all been thanks to Benlysta! I keep surprising my Rheumatologist who says I must be one of the few perfect candidates for Benlysta despite how aggressive my Lupus is and how many high risk factors I have being a young half-asian male.
But anyhow, I started Benlysta a few months after it was approved while my Lupus was as active and flaring as ever and I had been stuck on Prednisone for years with no other hope. Well, things immediately started improving after Benlysta. I get Benlysta once every 4 weeks ongoing. The medication infuses like saline, I have ZERO side-effects which was no surprise to me since I also had zero side-effects with Rituxan.
After many months, my rheuma slowly tapered me 1mg at a time from Prednisone and then stopped me at 5mgs which was a miracle dose to get to but then as things kept getting better and my pain medication tapered down and down, and my quality of life improved I told my rheuma I wanted to keep going down from Prednisone, but he was very hesitant saying it was pretty much a gamble and that the Lupus could come back full force if I push things. Eventually, it was agreed and I continued to taper down 1mg a month....and started on Christmas week I was OFF PREDNISONE after years of being on it! I have had no flares around March 2011 or something - I forget when my last flare was. And I cannot believe how much better I feel being off Prednisone. I actually only take PRN Vicodin and PRN Ambien as my oral meds...everything is gone! I even went off Plaquenil.
So things are definitely going far better than I predicted and I am a pretty steady optimist. So I wanted to let you all know that at least for one person Benlysta has been an actual miracle drug. I try not to think too much about the long-term impact of this drug since it is very new, but I'm just going to enjoy life for as long as this lasts. I figure, I was going to live with the effects of long term Prednisone either way, so Benlysta is worth the gamble. I hope you all are doing well, and look forward to reading any replies
I even posted a new picture of me. I took up the guitar as I started feeling better and even performed a song on my guitar on Christmas for my family (I was a nervous wreck and messed up but made it through the song). I did Slide by the Goo Gooo Dolls. I'm working on perfecting my next guitar performance for next week which will be Good Riddance (Time of your Life) by Green Day.
Enjoy the time we have, and keep pushing forward is how I feel about life.
Nate
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