Saphnelo vs Benlysta

Posted by climber @climber, 4 days ago

Hello all:

My primary question here is this: Does anyone here have experience with Benlysta and/or Saphnelo for improving (stopping the progress of) Lupus Profundus? How about its impact on other cutaneous lupus symptoms?

The background for this question:
I have cutaneous lupus and a currently unidentified nerve pain condition. One of my symptoms is Lupus Profundus (aka Lupus Panniculitis). The nerve pain issue started relatively recently and is very severe and is in the same location as my Lupus Profundus. This trauma has made the Profundus significantly worse.

I am currently on CellCept which has generally been very helpful for my various Cutaneous Lupus symptoms, but not enough to prevent the profundus from getting worse with the trauma of the new nerve pain.

I have had several doctors (including a Mayo Clinic doctor), recommend that I add Saphnelo, specifically to help curb the growth of the profundus.

I'm currently in the process of getting this approved through insurance and they are currently denying it, saying that I must try Benlysta first.

Since the various doctors are recommending Saphnelo over Benlysta for my specific condition, and the two drugs target the immune response differently, I'm reaching out here.

My cutaneous symptoms are Tumid Lupus, Lupus Profundus, Burning Mouth Syndrome, secondary Reynauds, an odd fingertip skin issue that seems neurologic but has been undiagnosed (better on CellCept), and this new significant neurologic pain that hits at random, but is primarily hitting the profundus.

Thanks in advance for anyone's input on their experiences with either Benlysta or Saphnelo and those drug's impact on their cutaneous lupus symptoms.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Hello @climber, I did a search of Connect and didn't find any comments or discussions on Saphnelo but did find some on Benlysta - https://connect.mayoclinic.org/search/?search=Benlysta. While you wait for members with experience to respond, I did find a 2023 study and another article on your question that might be helpful:

-- Researchers Found belimumab and anifrolumab to be Comparable Treatment Options for Lupus:
https://www.lupus.org/news/researchers-found-belimumab-and-anifrolumab-to-be-comparable-treatment-options-for-lupus
-- Saphnelo vs Benlysta? What is the Best Medicine for Lupus? [February 2025]
https://www.lupusencyclopedia.com/saphnelo-vs-benlysta/

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Hi @johnbishop:

Thanks for these links, I didn't find them in my search and these are really great articles.

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