After being in the hospital and treated with high dosage of med for a week I thought I would be remission; not the case it’s been three months and taking the Meds athome and my lupus is very active.
Question is Have anyone on here tried the benlysta treatment that is given intravenously if so can you give feedback if you or someone you know have received such treatment I am a little scared since it’s a fairly new drug I have faith that my dr wouldn’t steer me wrong but I need reviews that’s not from google
Not everyone is a candidate for Benlysta- and it is generally not used for a severe flare. Other drugs are out there too like Rituxan, IVIG, chemotherapy drugs etc. Highly complex it is up to your doctor to determine what drug is most likely to be effective so you need to discuss with him. There also is a Facebook group called Benlysta Buddies you might want to join BTW when I have a severe flare like yours my disease generally remains active for many months or even years My last hospitalization was 2 years ago and things are just quieting down. Doctors seem to be happy with improvement in blood work and not necessarily improvement in how you feel
According to my Rheumy I’m a candidate and Thanks I’ll check that group out and you are right about the blood results versus how you feel
poobie said:
Not everyone is a candidate for Benlysta- and it is generally not used for a severe flare. Other drugs are out there too like Rituxan, IVIG, chemotherapy drugs etc. Highly complex it is up to your doctor to determine what drug is most likely to be effective so you need to discuss with him. There also is a Facebook group called Benlysta Buddies you might want to join BTW when I have a severe flare like yours my disease generally remains active for many months or even years My last hospitalization was 2 years ago and things are just quieting down. Doctors seem to be happy with improvement in blood work and not necessarily improvement in how you feel
Hello Tamara,
Sorry to say this but although you was in hospital for a week highly dosaged does'nt put you into remission like that and as long as your Lupus is very active like mine..you'll still need medication.
I've not been on benlysta only plaquenil and Dapsone, here's a link about benlysta.
If you click on forum and type in benlysta and press search under forum discussions's, it will bring up thread's which member's have previously added about the drug....until member's answer in due course.
I'd ask "unshoreandscared & Dunnia" to also be friends as well as they've been on the medication.
Loads of love Terri xxx
Hi tamara… I havent been on Benlysta but im on Rituxan… Theyre kinda similar Rituxan its an old drug about 20yrs but it works wonderfull so far … My Dr. say im a candidate to Benlysta but he say he wants me to wait because Rituxan its doing me good right now…maybe you can ask your Dr. about it next time…Love Dunnia