Anyone used Belimumab to suppress the... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Anyone used Belimumab to suppress their APS?

Holley profile image
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My new rheumatologist mentioned Rituximab (which I had a bad experience w/ in 2006), Plaquenil, and Belimumab as possible drugs to suppress my Lupus Anticoagulant. Anyone heard of it or tried it?

ncbi.nlm.nih.gov/pmc/articl...

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Holley
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MaryF profile image
MaryFAdministrator

Hi, I have not used it, but I am allergic to most drugs so would not be an ideal candidate, I enclose this paper for you to read: ard.bmj.com/content/77/Supp...

MaryF

KellyInTexas profile image
KellyInTexasAdministrator

Rituximab is what I am starting, sorry.

May I ask what your reaction was? What strength? How often? How quickly was it infused? What other medicines were given in iv bag with it?

Often with aps and Sjögren’s Syndrome reactions can occur more often than other patients. ( Jill Schofield MD.)

Infusions must be given over an 8 hour time period. Zofran, Benadryl, and steroids and Tylenol are given also. Extra hydration the day before and day of.

Holley profile image
Holley in reply to KellyInTexas

I had what the nurse called a "colonergetic reaction." I was vomiting at the same time my bowels released (as my husband would say, "2 exits, no waiting"). My BP dropped really low. It was rare the nurse said. They slowed my third dose to the point where I had to go back the next day to finish it. They stole hospital scrubs for me to wear home (I had vomited all over my clothes). They gave me 25mg benadryl at first and then upped it to 50mg. It was given to me in pill form (not through the IV). Like I said, the reaction is not typical.

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