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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Infusions

A MyLupusTeam Member asked a question 💭
Panama City, FL

I have been sick with a bad flare for several months. My rheumatologist is putting me on Saphnelo infusions. It is pretty new. Can anyone give me insight or information on this I would really appreciate it . Thanks in advanced.. God bless.

January 9, 2023
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A MyLupusTeam Member

Oh My! I don’t have anything to complain about now.
Sending prayers your way!

July 7, 2023
A MyLupusTeam Member

Sorry it has taken so long for me to answer. It took me forever to figure this web page out. I have been on steroids, plaqunil, benlysta . Now starting Saphnelo Tuesday 4-25-23 It has attacked my blood platelets are non existent called ITP , my lungs COPD , my heart infection and blockage , my brain 2 strokes ,bladder (IC),and my joints permanently several surgeries on joints and veins. I also have Addison's disease no cortisol coming from my kidney's. Thank you all so much for answering my post God bless.

April 23, 2023
A MyLupusTeam Member

Could you explain what you mean by organ injury?
What organ are you pertaining to? I have had gallbladder & pancreatitis
pain. I have wondered if this is from Lupus. I also have fatigue/weakness.
Hope you feel better soon!

February 23, 2023
A MyLupusTeam Member

Are you having ongoing organ injury with your flare or mainly pain and fatigue?

January 10, 2023
A MyLupusTeam Member

Saphnelo is the newest of the lupus biologicals. I took Benelysta, which was wonderful, but I am allergic to it. They target a certain t-cell protein. I asked for Saphnelo, but got Actemra. I am having good success with Actemra - it dropped my sed rate from 68 to 8. I hope Saphnelo will do the same for you. Is this your first biological?

January 9, 2023

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