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LaurElizabeth

529d

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

Top reply
    • Triple_C

      515d

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

    • Triple_C

      516d

      Benlysta didnā€™t work for me but my doctor FINALLY found an injection that has worked wonders for meā€¦ 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 donā€™t think Iā€™d b alive right now!!! Plus I went through 12 rounds of Chemotherapy ā€¦. It was called Cytoxin. I was literally on my deathbed, I was 95 lbs and Iā€™m 5ā€™9ā€ I was a skeletonā€¦. People looked away cuz I was so scary looking šŸ˜žā€¦. 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 donā€™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 medicationā€¦ itā€™s keeping me alive and not so darn miserable šŸ˜–!! Hang in here kitten!! U got this!! Just gotta take it day by day my friendā€¦ thatā€™s all we can do. U can contact me on FB or IG under Breann Van Fleetā€¦ feel free to contact me anytime my friend!! Youā€™re not alone, Iā€™m here for uuuu!! Much love šŸ’• and many prayers are sent your way from meee!!!:))

      • LaurElizabeth

        515d

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

        • Triple_C

          515d

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

    • Dolls

      528d

      Me too been wanting to try benlysta or saphnelo

    • Rayningtigress

      528d

      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

        527d

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

        • Rayningtigress

          526d

          @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

      528d

      I am currently on plaquenil but am also interested in trialing a new medication and heard of this new med but donā€™t know much about it.

      • LaurElizabeth

        528d

        @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

      529d

      Have you tried Plaquenil yet?

      • LaurElizabeth

        528d

        @Paisley85 yes been on it for some time

ā˜ 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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