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LaurElizabeth

388d

Thinking about trying benlysta for lupus has anyone tried this medication?

Top reply
    • Triple_C

      375d

      @LaurElizabeth you are very welcome 🤗 my friend!! Feel free to contact me if u ever need support or just a friend with a horrible disease 🦠 in common… I lost all of my friends when I first got diagnosed with Systemic Lupus so I could really use a nice friend!! It’s up to u.. I’m here if u ever want, k?!! Take care and God Bless you and your family;))

    • Triple_C

      376d

      Benlysta didn’t work for me but my doctor FINALLY found an injection that has worked wonders for me… it called Acthar Gel and you have to inject yourself twice a week in the belly or arm, I prefer the belly, but you should really talk to your doctor about Acthar Gel!! Without that medication, I don’t think I’d b alive right now!!! Plus I went through 12 rounds of Chemotherapy …. It was called Cytoxin. I was literally on my deathbed, I was 95 lbs and I’m 5’9” I was a skeleton…. People looked away cuz I was so scary looking 😞…. But the chemotherapy saved me too!! Please talk to your doctor about both of these medications!! My insurance covers the Acthar Gel but one tiny bottle costs $50K retail and I don’t pay anything with my insurance. I really hope your insurance covers Acthar Gel!! It worked wonders for me and I hope that it helps you!!!! I strongly recommend this medication… it’s keeping me alive and not so darn miserable 😖!! Hang in here kitten!! U got this!! Just gotta take it day by day my friend… that’s all we can do. U can contact me on FB or IG under Breann Van Fleet… feel free to contact me anytime my friend!! You’re not alone, I’m here for uuuu!! Much love 💕 and many prayers are sent your way from meee!!!:))

      • LaurElizabeth

        375d

        @Triple_C thank you so much for all the info and I’m so glad u found treatments that worked I will def look into both I appreciate the suggestions so much !

        • Triple_C

          375d

          @LaurElizabeth you are very welcome 🤗 my friend!! Feel free to contact me if u ever need support or just a friend with a horrible disease 🦠 in common… I lost all of my friends when I first got diagnosed with Systemic Lupus so I could really use a nice friend!! It’s up to u.. I’m here if u ever want, k?!! Take care and God Bless you and your family;))

    • Dolls

      387d

      Me too been wanting to try benlysta or saphnelo

    • Rayningtigress

      388d

      Im trying to get my dr to put me on it too. I haven't had abreak from this last flareup and im over feeling like this.

      • LaurElizabeth

        387d

        @Rayningtigress I feel you there kinda in the same boat I’m so tired of feeling exhausted

        • Rayningtigress

          386d

          @LaurElizabeth its also terrifying for me cause no one has explained anything to me. Last friday, i started getting chest pains when i breathed and i was terrified. I couldn't get ahold of my rheumatologist or my pcp. I ended up calling the nurse line, only to find out, that its a symptom of a flare up. Every day. Every step is painful.

    • ARose1

      388d

      I am currently on plaquenil but am also interested in trialing a new medication and heard of this new med but don’t know much about it.

      • LaurElizabeth

        388d

        @ARose1 same my dr actually suggesting thinking about starting it and all of a sudden I noticed some people talking about it- I am def thinking of giving it a go

    • Paisley85

      388d

      Have you tried Plaquenil yet?

      • LaurElizabeth

        388d

        @Paisley85 yes been on it for some time

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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