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Kaycal

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 #1 
I will be receiving my third dose of a 3 dose loading dose of Benlysta! Is there anyone out there receiving this medication? My rheumatologist said it may take up to three months to see an improvement. Interested to know how you're doing. I seem to have failed most treatments in the past over the last 5 years!
NineLupusLives

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 #2 
Hi Kaycal,

My Rheumy asked me to give Benlysta at least a six months trial. We will evaluate my response this Monday @ seven months.

I'm definitely not worse. Would I be "worser" without it? Who knows? Hopefully my labs next week will decide. It is my understanding that Benlysta focuses on one particular antibody that seems to focus on lupus patients. For that reason it is effective in some Lupus patients, and much less effective in others. I suppose it depends on what part of our immune system (antibodies) decides to go rogue, and who else decides to join in on the siege.

Hang in there!

9 Lives

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Life is what happens while we are planning to do something else.
Rainmountain

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 #3 
Hi Kaycal,
I am also just starting Benlysta, having had my second dose just a couple of days ago. Although it is early in relation to the average time span for improvement, I am already feeling a decrease in my fatigue level. I no longer have that constant desire to lay down instead of working throughout the day. Even this is a big relief for me. Forcing myself to try to get things done instead of laying in bed was agonizing. I am still tired by early evening, but to be free of that all day burden has given me new hope.
Here's hoping you will feel some relief soon as well,
Rainmountain
Kaycal

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 #4 
Thank you so much for the information. It is so helpful to actually hear from someone who is on the medication I really appreciate it.
Kaycal

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 #5 
I have had my three loading doses and now I am on a monthly maintenance dose of Benlysta. I do seem to have more energy however previous to this infusion I had a lot of joint pain there is little improvement in my joint pain. My biggest side effect is affecting my Gut and I have a lot of nausea but takes about five days to a week to really get over that side effect. But we will see in a couple months that's when we're going to determine how this is working , I am hopeful
Lifesclue

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 #6 
Benlysta was considered recently for me as a form of treatment so the information in here is very helpful. My rheum is weighing the options of me receiving it or not. I have a complication with lymphoma so they have been mostly using Rituxan to treat both and that has been successful in the past for me.   
LadyReLupusQueen25

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 #7 
i have been on benlysta since for 4 years now and at time i feel like it works , and at time that it doesn't help cause i countinue to have sever lupus issues , anxiety, depression. i'm going to see my rheumy on the 25th and i wonder if there are any other i.v. treatments i can try that might help me control my lupus symptoms
Kaycal

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 #8 
Benlysta users. Have you experienced dizziness and low heart rate. Following up with MD .. Wondering if side effect of benlysta.
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