Hello my friends! I am officially the worst blogger ever, but am glad to be chatting with you again. It has been a very busy few months. Our annual event, Serving up Style, was a great success. We reached over 10,000 people and shared our new awareness campaign Voices of Lupus with many people, telling the stories of lupus patients. The gala was also a great success and we doubled both the amount of guests that attended and the amount of money raised. Over all, it's been a really fantastic few months even if it is a little busier than my normal life.
Yesterday I started my first infusion of Benlysta, the first approved drug for Lupus in over 52 years. The hardest part was finding a vein in this dehydrated body of mine, but after that it was pretty smooth sailing. I got a little nauseous half way through, but ate a cookie and felt better almost instantly.
Today I have felt a little crummy. I definitely have a headache and am nauseated. As long as I nibble on something, the nausea seems to stay under control, but the headache is definitely the most annoying of my symptoms. They say it should only last a couple days and then you are good until your next infusion.
The way I understand how this drug works is that you have an IV drug treatment once every two weeks for the first month and then you only have to do it once a month after that. If it means no extra pills and that it may make the ups and downs of my disease better, than I figure it is definitely worth a shot.
I'll be sure to update you all as the week goes on as to how I am feeling but for now I hope that you are all well and having a pain-free day!!
"A journey of a thousand miles must begin with a single step."
~Lao Tzu
Tuesday, October 25, 2011
Benlysta Vista
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4 comments:
My prayers are with you and may you receive the Peace and strength of our Lord to fight your battle.
My name is Elyshia,I really hope your treatment helpss you and i hope god is on your side. Im a 15 almost 16 year old young lady and i also have lupus... It runs through my family, and i am not sure if I want to try treatment or just tough'n it out and see where it leads/ gets me. I would really apreciate it if you could kindly reply back
I have asked my doctor to start this new drug and was told that I am not that far at the end for that drug yet? I am puzzled about this, do I have to be bad off to get this new drug?
To Pattie: Every doctor is different on their response to Benlysta since it is new and there are problems with coding it with insurance during the first year. I would check it out on the web and maybe get a second opinion. There are also other new drugs coming soon that might work for you. Check the Lupus Now Magazine and an article by Heather Boerner "Path to Progress", Summer 2011 issue. Also, you might want to participate in a clinical trial, if your doctor agrees this is a good path for you. Here's to hoping we all are able to find the answer to this ongoing disease that overshadows our lives.
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