Saphnelo for Lupus User Reviews

• lkt...
• Taken for 6 months to 1 year
• June 21, 2023

"I began Saphnelo in August 2022. During the first infusion, I experienced dizziness. Ten minutes later, I developed a migraine and nausea that lasted 2-3 days. The same symptoms occurred during the second and third infusions. For the fourth infusion, I made sure to stay well hydrated and took 2 Extra Strength Tylenol before the session. This seemed to help alleviate the symptoms. In November 2022, during my yearly eye exam, it was discovered that I had Plaquenil toxicity and optic/retinal nerve damage, and I was taken off Plaquenil. Fortunately, I was still on Saphnelo and hoped it would be my saving grace. However, as Plaquenil left my system, I started feeling progressively worse. I became sicker than I had been in years. From January to May 2023, while still on Saphnelo, I contracted COVID twice, Norovirus, several sinus infections, and a UTI. My infusions were delayed by a week or more each month, and I even missed one infusion entirely. As of June 2023, since my last infusion 10 days ago, I have been experiencing constant nausea, an ongoing headache, a sore throat, dizziness, chills, and a low body temperature ranging from 95.2° to 96°. If this is the future I can expect while on Saphnelo, I am considering discontinuing the medication."

• Jun...
• Taken for 1 to 6 months
• July 4, 2024

"My doctor gives pre-infusion meds of acetaminophen, an antihistamine, and a steroid to lessen any effects from the infusion. I haven't had any problems with the infusion so far (I've had two infusions so far). I've noticed since starting Saphnelo that I have fewer and much milder flares of fogginess, fatigue, stiffness, mouth sores, and even lower back pain-especially during the first week or two after the infusion. I have noticed that I've been coughing more than usual since starting the treatment. I'm a little concerned about developing some kind of serious infection, but so far, so good. Overall, this has been a positive, helpful treatment. It has helped more to ease the Lupus symptoms than anything else I've been given."

• MHH...
• Taken for 1 to 2 years
• January 8, 2025

"Have been dosing Saphnelo for about 2 years. Intervals change from once a month to once every two months while maintaining the effectiveness. Currently not taking any other medicine, and SLE flare is well under control until I missed the appointment."

• Liz...
• Taken for 1 to 6 months
• March 27, 2025

"I had my 5th infusion yesterday. I don't feel any different as far as SLE goes. I was diagnosed 6 months ago, immediately started hydroxychloroquine, and put on Saphnelo one month later. I will give it one more month."

• Liz...
• Taken for less than 1 month
• December 4, 2024

"After 5 minutes of infusing, I felt faint. 5 minutes later, chest tightness. Nurse stopped infusion for 10 minutes, and I finished. I felt fine after that and plan the next infusion later this month. I believe I have a little less fatigue, but I was very ill before I received the first infusion."

• Bre...
• Taken for 1 to 6 months
• December 3, 2024

"My lupus developed quickly, and the prescribed medications prior to Saphnelo worked very slowly and eventually seemed to stop working at all. Obviously, insurance wanted to try other medications because of cost, but nothing else worked and/or caused additional symptoms and issues. Saphnelo started working around 2-3 months, and it was visibly noticeable. As the months progressed, side effects have started developing: congestion and headaches caused by the congestion. At first, it was a few hours after the infusion, and now it's until days later, usually gone within a few days. This definitely is very mild compared to my lupus symptoms."

• Bub...
• Taken for 6 months to 1 year
• June 24, 2024

"It is amazing. I am pain-free and having amazing energy. It has given me back my life."

• Gra...
• Taken for 1 to 6 months
• October 22, 2023

"I have had no lupus fevers since starting Saphnelo. I also have more energy and my bloodwork has returned to normal for the first time in years."

• LaL...
• Taken for 2 to 5 years
• April 6, 2025

"I was bedridden before Saphnelo - it’s given me my life back. Bedridden to skiing!!!"

• Oli...
• Taken for 1 to 6 months
• September 13, 2024

"Still new, but it has reduced my flare-ups a little."