Has anyone tried Benlysta??

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kookla34
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 4/5/2012 6:51 PM (GMT -6)   
Just wondered if anyone here has tried this medication?

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 4/5/2012 6:55 PM (GMT -6)   
A couple of our members have considered it but I don't think anyone has actually tried it yet. Seems like no one really wants to be first! lol
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

kookla34
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 4/5/2012 7:18 PM (GMT -6)   
Ha ha.. too funny! I have been reading about it. I have heard it it is super PRICEY. I asked my Dr about it just recently and he asked me if I had a rich boyfriend. lol I DOUBT medicare covers it. He told me he "thought" it would be something that could actually really help my condition. He said I would probobly have to apply for some kind of assistance thru the hospital.
Steph

Diagnosed SLE since 1995, Lupus anticoagulant, Class 4 Kidney disease, depression, seizures & a stroke.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/5/2012 8:14 PM (GMT -6)   
My Rheumatologist thought it would be helpful for me as well, but the insurance balked at the price....so we are looking at other options.
 
Oreo

Bsime
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Date Joined Apr 2006
Total Posts : 1344
   Posted 4/5/2012 9:10 PM (GMT -6)   
A couple of my friend have been treated and had good results.  It is expensive but it is labeled for lupus and insurance will cover it if your doctor advocates for it...medicare as well.  Like all treatments, it is not for everyone and should only be considered if you have a severe and/or chronic case that doesn't respond to other meds.
 
As for expensive, think about IVIG which is what more myositis ( I have polymyositis) patients are using and it is off label for almost everything.  Treatments range from $30,-50,000 per infusion!  It was the treatment that saved my life 7 years ago but it is now 8-10X more expensive than it was in 2005. 
 
Any of these newer biologics or IVIG are too expensive unless you are truly wealthy or your insurance will cover it.
 
Bill
 
 

kookla34
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 4/5/2012 9:27 PM (GMT -6)   
Bill.... medicare will pay for Benlysta if your Doctor advocates it?
Steph

Diagnosed SLE since 1995, Lupus anticoagulant, Class 4 Kidney disease, depression, seizures & a stroke.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 4/5/2012 10:13 PM (GMT -6)   
That is what I have heard.  It is FDA approved for lupus and is not off label.  Of course, your doctor will have to justify using it and say that other, cheaper meds do not work.  I think all of the insurance companies are taking that position. 
 
Bill

kookla34
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 4/5/2012 10:43 PM (GMT -6)   
Wow, thankyou for the information Bill. I am definitly going to look into that
Steph

Diagnosed SLE since 1995, Lupus anticoagulant, Class 4 Kidney disease, depression, seizures & a stroke.
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