View Full Version : starting benlysta today :)
04-29-2013, 09:54 AM
Hi there, wish me luck, as I am starting benlysta today. My dr. kept insisting on it. Let's hope it works! Especially with the fatigue, I've barely been able to keep my eyes open lately. I've read others trials with benlysta on here, but I couldn't find any that reported back after say, 6 months or so. Fingers crossed....
05-01-2013, 01:50 PM
Best wishes and good luck with it Shanna. May it help you a lot, and cause negligible side-effects... |;^)
05-02-2013, 08:19 AM
Knock on wood.... so far so good. Sure I've been tired and achy...but nothing more than what I deal with normally. Although, I've noticed more hair falling out the last couple of days. I'll update the further along I get.
Keep us posted! I have have heard some good reports and some not so good (like with all the meds). I am keeping my fingers crossed!
06-22-2013, 08:26 AM
my doctor tried to get me started on it, but I have no health insurance coverage so it was not feasible.
please keep us posted.
06-25-2013, 06:35 PM
Today I had my fourth treatment. They do cause some fatigue for a few days, but I'm used to that :) .now I'm on the one every four weeks schedule, and I do feel a little better. My blood hasn't shown any changes yet, but the doc says it could still take awhile, but I am doing ok on it so far.
06-26-2013, 01:42 AM
I am glad to hear it is working out well for you. have you noticed any real difference in your symptoms yet?
06-26-2013, 05:41 AM
10-26-2013, 08:35 AM
Here is an update on the Benlysta infusions. I've been getting infusions every month for about 6 months. I feel so much better and I have LOTS more energy. We went to Magic Mountain and Knotts Berry Farm in California, the first day was 10hrs of walking in the sun up and down hills,riding roller coasters(being jerked around) ! Then the next day was Knotts, more rides and lots of walking. I was extremely worn out and in pain, but after a couple of days rest and nothing else, I BOUNCED back!! In the past, that would have landed me in the hospital for sure.
I have had weight gain, but I would have it if I was off Benlysta cause I'd be on steroids. I have also been able to reduce my Cellcept and pain meds. I'm not in remission ,the Lupus,Sjogrens is still active but the symptoms are so much better.
I feel a little bit more like my old self!
It feels so invigorating to have some passion for life back, I'm thankful for every second that I'm out there living!