Generic Name: Saphnelo for Lupus (anifrolumab)
Saphnelo for Lupus Reviews
"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°-96°. If this is the future I can expect while on Saphnelo, I am considering discontinuing the medication."
"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."
"It is amazing. I am pain-free and having amazing energy. It has given me back my life."
"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."
"Still new, but it has reduced my flair ups a little."
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