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Anyone Participating In Drug Study For Lupus Meds?

Anyone Participating In Drug Study For Lupus Meds?

I am currently in a phase 2 double blind study for Epratuzumabx a cousin drug to Benlysta. I actually enjoy participating except for the commute but I am feeling beneficial results.

Looking to compare notes south others testing new medications. Thanks <3

A MyLupusTeam Member said:

Been in a Benlysta trial study for 6 yrs, and I will have my last infusion in a couple of weeks. Benlysta has definitely been beneficial for me, but will not be able to continue on the drug because Medicare copay is too much.

posted over 6 years ago
A MyLupusTeam Member said:

look to the makers of benlysta, the pharmacutical drug maker...ask if there is a program that can assist you with the part medicare won't pay for. If that doesn't work, which is highly unlikely not to...go to your local social services department and ask about supplementing with medicaid ( you could also call social security about this too and they may apply for supplemental programs for you). Never be afraid to ask...all anyone can say is no.
All these comments have helped me make up my mind about doing the infusions...Question, has it lowered your own immune system ?

posted over 6 years ago
A MyLupusTeam Member said:

I go open label mid January which means I will be getting the med for sure. I felt improvement in the double blind portion of the trial but had several interruptions due to health issues so even ifi was getting the medicine I didn't get it as prescribed.

posted over 6 years ago
A MyLupusTeam Member said:

I'm checking on a few things.... Benlysta definitely helped. My labs showed a big improvement, but I never went into remission.

posted over 6 years ago
A MyLupusTeam Member said:

I am not in a study but I am real interested in hearing how that works out for you. I have been on Cellcept and something else (fog) I forgot the name for yrs. Nothing has worked for me, but I also have hep c so I cant take some of the new drugs

posted over 6 years ago
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