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sfowler05

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 #1 
I've been on cellcept for my SLE about 12 years now and I moved and am seeing a new rheum. Now this past year I have had alot of skin issues and currently experiencing hair loss. I told him in the past other doctor's have mentioned Benlysta and I was not impressed with the efficacy for African Americans and for quality of life, prefer to take a pill. He said it's clear the cellcept and plaquenil aren't controlling my symptoms and wants me to consider. Anyone, preferably African American, have any experience switching from Cellcept to Benlysta?

Thanks in advance!

Robinj

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 #2 
Have you had a biopsy of the skin? African Americans are particularly prone to discoid lesions. 
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NineLupusLives

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 #3 
Hi sfowler05,

I am not African American, I'm your basic meld of a Caucasian mix of Irish, British, German Dutch, and Scottish.

However, I have been on Plaquinel for close to 20 years, did Methotrexate for five years (big help for me, but had to go off due to low WCC) and started Benlysta in August of 2016, while continuing the Plaquinel. I do not have kidney involvement.

I think the Benlysta has helped some with my afternoon fevers, hair loss, fatigue, and also with my skin lesions. It is my understanding from my Rheumy that Benlysta targets one particular autoimmune antibody. For that reason it helps some lupus patients and is ineffective in others. As my Rheumy once told me, Lupus is probably not one disease, but more like eleven. It kind of depends on what part(s) of your immune system decides that your body is the enemy.

My Rheumy asked me to stay on it for at least six months and then evaluate its effectiveness. I see him next month to decide if I stay on it or not. I was shocked to find out that Benlysta charges my Rheumy's office $5,000 per infusion (monthly). Fortunately, most of the portion that my health insurance doesn't pay is covered by Benlysta. (That may be because I may be in some kind of trial, because I answer a Benlysta questionnaire every couple of months.)

As far as quality of life, I seem to tolerate Benlysta very well. The first few infusions left me fatigued day of and day after, but that doesn't happen to me anymore. I would encourage you to proactively get a good understanding of the cost from your new Rheumy's business manager. If you decide to give it a try, be prepared to be in it for six months. This is not the first med we have taken that has to build up in our body before we know if it is helping.

Take Care,

9 Lives






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sfowler05

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 #4 
Thanks so much, very helpful.

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