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Benlysta
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secretagentmouse posted:
Guten Morgen! I'm Mousey in disguise. (yes, i lost my info and havent been here in years).

Anyway, I wrote a blog about it and the trial I was on, but was wondering if anyone else has had the joy of being on Benlysta (Belimumab)?

I'd love to hear from anyone else who's had it. Or I can share what I've gone through with it and highly recommend it. I'm the only one at my hospital who gets it that I know of. I'm also incredibly excited that it's now recognized by insurance companies for what it is, what it does, and what it's actually for!

I've been on it since 2011 and have had wonderful results ever since.

Happy day to all!
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lupylisa44 responded:
Hi Mousey!

Are you on the Wolfpack oldies facebook group? Everyone is there from the old gang! It's called Lupus Wolfpack (Oldies but Goodies) if you want to join let me know. you cana email me at lupylisa@yahoo.com and I will give you the details.

There is also a fb group called Benlysta Buddies that you might want to join to tell your story with Benlysta for all the newbies!

I have been on Benlysta since August for my stage V lupus nephritis and it seem to be working very well. My kidney numbers have gone way down since starting it. the nly problem is the cost! I don't qualify for any assistance programs. Iam too poor to be rich and to rich to be poor!!! But better broke than dead!

Glad to see you here!!!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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secretagentmouse replied to lupylisa44's response:
Niiice. And yeah, Benlysta Gateway Program isn't accepting anyone like me who's on a platinum plan for individual insurance even though it's basically the same thing, except we're not paying $1236 for it. lol! And as usual they don't accept medicaid of any kind. You'd think they would. -.- Especially since it's about $56,000 when you get the bill. At least it is for me, and that's with everything added together. haha!
As for tests, that's awesome! My numbers plummeted and my dsDNA count is in the double digits rather than the quadruple digits. ^.^


About the FB groups, sure, i'd lurve ta join!

want me ta email ya?
 
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lupylisa44 replied to secretagentmouse's response:
Yes, please email me and put lupus wolfpack in the subject line so I know it's not spam

lupylisa@yahoo.com
With love, with patience and with faith, we'll make our way.


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