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Author Topic: Benlysta (Belimumab)  (Read 3176 times)

gurs

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Re: Benlysta (Belimumab)
« Reply #15 on: December 28, 2012, 03:40:35 AM »
Im kinda in the same boat..have tried all other therapies, and could not tolerate the side effects. I havent had rituxan in almost 3 years, and decided to give it another whirl. Im going to try having some saline injections every few days after in the hospital to help me with my hyrdration. My POTS really does a number with this. Ive been on 20mg of steriods for the last 3 years, and its taking its toll, not to mention, doesnt seem to work as good either. Guessing I need more of them, which I wont do.

Seems your doc might be able to write the order up in a different way to get the benelysta approved? not sure if its just approved
for lupus or maybe RA too? sometimes if they put a diagnoses of RA/Sjogrens/autoimmune etc?

More than likely, most of us have the overlapp of autoimmune diseases anyways?

Gursie
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52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

teresa

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Re: Benlysta (Belimumab)
« Reply #16 on: January 03, 2013, 05:29:37 PM »
yes, I actually have enough symptoms to be classified as Lupus as well.  The rheumy may have to use the lupus diagnosis to get Benlysta approved.  However, I don't want the lupus diagnosis.  I am only in my 30's and am afraid it would cause lots of problems to have that diagnosis.
 Interesting, my cardiologist said I have POTS as well.  But, sometimes my BP is low and other times it is high, very confusing.  I have tachycardia as well and am on massive Beta blockers, which I know add to the fatigue.
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