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Is Benlysta Bad If You My Have CNS Lupus

Is Benlysta Bad If You My Have CNS Lupus

I've Ben diagnosed by my rheumatologist with SLE Lupus & just had my first Benlysta infusion yesterday. I've had brain/nerve damage from an auto wreck since 2001 and have spent most of the last 5 years at a local neurologist who did find cyst, white matter & carotid artery dissection but referred me to Neurosurgion Dong Kim's team at Memorial Hermann who's given me a new neurologist & vascular neurologist if they find out I have CNS Lupus & as long as they don't diagnosed me with PML or the JC… read more

A MyLupusTeam Member said:

It has helped with my mini strokes a long with the Plaquenil and Prednisone.

edited, originally posted over 6 years ago
A MyLupusTeam Member said:

@DianeBlair- Since I have been on Benlysta I have done so much better. My energy level is better alone with my attention span, I do not swell as much and I just fell better. When I say regulated I mean keeping my flares, the ache and pain to a lower level. i do not have all the ups and down on a day to day basis. Now don't get my wrong I still have bad day. Alone with the Benlysta is Plaquenil and Prednisone.

edited, originally posted over 6 years ago
A MyLupusTeam Member said:

I have been on Benlysta for SLE Lupus about 2 1/2 years and it is the first medication that has keep me regulated.

edited, originally posted over 6 years ago
A MyLupusTeam Member said:

I was on Benlysta for about 6 months. I really didn't see where it made a difference except I kept getting UTI's. So my Dr took me off of that and now wants to try a drug called Rituxan.I hope the Benlysta works for you and you feel better.

edited, originally posted over 6 years ago
A MyLupusTeam Member said:

Benlysta works by inhibiting the action of B cells, part of the immune system. As you are aware, your case is pretty complicated. I doubt a doctor would even venture a guess in a forum like this. Ask to read the patient insert that comes with Benlysta. Go on the Benlysta website and read about potential side effects. I have not heard of neurological involvement with Benlysta, but that does not mean it can't happen. These are conversations only your doctor can have with you. That said, learn as much as you can so that you can be proactive.

edited, originally posted over 6 years ago
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