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529d
Thinking about trying benlysta for lupus has anyone tried this medication?
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Chest pain
Acute lethargy
Systemic Lupus Erythematosus (SLE)
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515d
@LaurElizabeth you are very welcome š¤ my friend!! Feel free to contact me if u ever need support or just a friend with a horrible disease š¦ in commonā¦ I lost all of my friends when I first got diagnosed with Systemic Lupus so I could really use a nice friend!! Itās up to u.. Iām here if u ever want, k?!! Take care and God Bless you and your family;))
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516d
Benlysta didnāt 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 donāt think Iād 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 Iām 5ā9ā I was a skeletonā¦. People looked away cuz I was so scary looking šā¦. 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 donāt 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¦ itās keeping me alive and not so darn miserable š!! Hang in here kitten!! U got this!! Just gotta take it day by day my friendā¦ thatās all we can do. U can contact me on FB or IG under Breann Van Fleetā¦ feel free to contact me anytime my friend!! Youāre not alone, Iām here for uuuu!! Much love š and many prayers are sent your way from meee!!!:))
@Triple_C thank you so much for all the info and Iām so glad u found treatments that worked I will def look into both I appreciate the suggestions so much !
528d
Me too been wanting to try benlysta or saphnelo
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.
527d
@Rayningtigress I feel you there kinda in the same boat Iām so tired of feeling exhausted
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.
I am currently on plaquenil but am also interested in trialing a new medication and heard of this new med but donāt know much about it.
@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
Have you tried Plaquenil yet?
@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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