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Benlysta.... thoughts...?


Posted by Gypsea N. Facebook

* FDA clears Human Genome, Glaxo drug Benlysta

* Available in about two weeks say companies

* FDA asks for further study in black patients

 

 

WASHINGTON, March 9 (Reuters) - The first new treatment for lupus in a half-century won U.S. approval on Wednesday, a milestone for patients with the disabling disease and a potential blockbuster for its tiny biotech maker.

Health officials cleared Benlysta, discovered by Human Genome Sciences Inc ( HGSI.O ), to combat the disease that causes the immune system to attack joints and organs and has proved tough to study and treat.

 

Ok... It has only taken a half of century to approve this drug.  (personally, I take nothing....except in dire, DIRE emergencies....

Curious to see what other SLE patients think....

 

 
Comments (5)
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I have been taking Benlysta for over two years.  It greatly helped moderate my lupus over time, and quieted the congitive problems associated with my CNS lupus involvement.  My flares are much smaller and shorter.  However, it did not help my joint swelling and tendon pain much, nor control my lupus peripheral neuropathy.  It has helped me drop from 10 mg. day of prednisone down to 3.5 mg.  I am still working on trying to get to zero mg., dropping at a rate of .5 mg daily each month.  This is the first time I have been this low on the prednisone dose in over 15 years.  My immune system is mostly intact, and I have been successful fighting off bronchitis and some other respiratory infections WITHOUT antibiotics, but also had a UTI that put me in the hospital a few months ago requiring IV antibotics for 3 days.  Overall, moderating to my lupus, but very expensive for my insurance company.

I have Lupus and start Benlysta this next week.  Has anyone taken this IV Infusion and if so, what do you have to say about it.  I am somewhat nervous about it.  It does have alot of side effects, that concern me.

GlendaS

I've talked to my rheumatologist about it. He told me that there is only a 30% success rate so far with SLE patients. He told me that I can try it but he wants to try other things first. He said that it's a long process and usually expensive so right now I am going to wait a bit.

From his other patients that have tried it, it's only helping with pain in their muslces. Some benefit with memory and such but mostly just pain.

Tiffany, I am kind of feeling the same way. I had an appointment last week due to a flare and my rheumatologist increased both my prednisone and methotrexate - and made no mention of switching to Benlysta. I wonder if there is a period of time where doctor's like to see how it's going before they jump right into messing with all of their patients medications. My doctor is at the University of Minnesota and they usually are fairly "out there" when it comes to new treatments.

It would be nice to hear from others as to what their doctors have been saying...or not saying!

I'm curious about it although I must admit my rhuematologist does not seem phased or likely to use it anytime soon. I'd love to get off of damaging medications such as prednisone and methotrexate and onto to something that is designed to fight lupus instead.
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