View Full Version : newbie/ wanted to ask about benlysta

09-06-2011, 08:01 AM
Hello, I am new to this site and was wanting some feedback. First let me give you some backround. I was told I had contracted lupus 4 years ago ,( after the birth of my son) It's been very aggressive. In the past 4 years I have had anemia which caused ne to have a uterine ablation, 2 kidney biopsies, a brain MRI and recently thay found rentinal hemoraging in my eyes, I have been in flares more often than not at least 1 week out of a month. I have been on multitude of meds from prednisone to Imran TO cell CEpt and methotraxte and the also tried IV cytoxin. None of thses drugs have put me into remmision, except one the new drug Benlysta.My question is is anyone on this site on it, I am onlty one of three in my area to be on it. My concern is when I was being dosed It work wonderfuly for about a week but then stopped but my rhumy told me I wasn;t fully dosed yet well I have had all my initial 2 week dosing and I am not scheduled for my next dose for a month. I am so worried it won't last the full month and I am going to have all the pain comming back. I never knew how much pain I was in until this Benlysta worked and I don' t want to go back to that. anyone that knows or can help put my mind at ease would sure be welcomed.

09-06-2011, 08:33 AM
I wish I could help you but the Benlysta cost $35,000 year in the states (without insurance) so it will not be an option for me. I believe that Slim has been on it though. Maybe she can give more information.

I do understand about the pain. I think we get used to a certain amount and don't know how bad it is until something helps take it away. I will keep my fingers crossed that things go well for you

09-06-2011, 09:50 AM
Here's the blog that slim has on here about her Benlysta treatments. There's a second one also that you can get to from this one. http://forum.wehavelupus.com/entry.php?379-Had-my-first-Benlysta-treatment&bt=1046#comment1046

09-06-2011, 11:11 AM
Have you ever contacted the drug company...thay gave me $7,000 for my meds... of course that is if my insurance considers it a medical nessecity, but I have also found (through the grapevine ) that some rhumys won't consider it cause it is sos brand new I think that is a travisity because it works so well . And even if I am pain free for only two weeks that;'

09-06-2011, 11:13 AM
My rheumy mentioned putting me in a trial group if I needed it because she said I fall in the group that would benefit from it. Thats another option since trials are typically free from my understanding because the company pays for all of it.