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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.

Anyone Taking Saphnelo?

A MyLupusTeam Member asked a question 💭
Harkers Island, NC

If you are taking Saphnelo:
Did you have a reaction/side effects?
Has it been effective? Reduce your Lupus symptoms?
Had you taken Benlysta before taking Saphnelo?
Thank you.
Aileen

March 1, 2022
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A MyLupusTeam Member

I recommend getting the Shingles vaccine. I got Shingles at the same time as a Lupus Erythematous outbreak on my skin. The burning pain is horrific. I'm only 47, and the recommended age for vaccine is normally 50, but there is at least one other lady, age 45 , near me who got Shingles, so I think the age limit isn't applicable to people with auto immune conditions, just my opinion.

June 27
A MyLupusTeam Member

Hello,
My doctor recommended that I take Saphnelo for my skin issues. Has it been working for you guys? Also, what side efffects can I expect? My doctor advised that I need to get the shingles vaccine before beginning Saphenlo. Any advice would be greatly appreciated. Thank you.

June 27
A MyLupusTeam Member

Hi there!
I took Benlysta infusions for almost three years and it worked wonderfully for me until the last 8 months, where it became totally ineffective. All the pain, stiffness returned so I was recommended to try the new Saphnelo when it came out.
I had the Shingles shots in advance and had the first infusion- no problems. After the second infusion I felt awake, less fatigued, little to no pain and was thrilled!
Right before the third infusion of Saphnelo, I noticed cold sores starting and wasn’t worried, initially. Within 7 days, I had several facial herpes sores on my lips, cheeks, nose - that would not respond to an anti-viral medicine. I have never had an issue with these in the past- I have been on antivirals for four months now and stopped the Saphnelo, my dr thinks my immune system is too weak.
It was magic when I had it- good luck to you!!!

October 24, 2022

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