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New Member

Date Joined May 2011
Total Posts : 2
   Posted 5/15/2011 8:44 AM (GMT -6)   
I am starting my first treatment of Benlysta on Tuesday and I am excited but nervous as well about it. I read so much information on it and the side effects scare me. Has anyone experienced any side effects from this drug and if so may i ask what they were. For the ones that took the medication did you have to stay on all your others or were you removed from them.

Post Edited By Moderator (aimsgirl16) : 5/15/2011 7:58:43 AM (GMT-6)

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 5/15/2011 9:05 AM (GMT -6)   
I am trying to decide to do it or not. It is up to my decesion now that the rhuemy has told me its ok. We talked about it in depth for about 30 minutes. I was told I would be staying on all my other medications until Benlysta had time to get in my system. Then we would slowly start coming off the prednisone and see about the other stuff. But I was told I would probably not get able to get of the medications used to treat my kidneys! She said so far, the few people who have tried it in her office have not had any adverse affects and it was too soon to see any good from it. I think they had only had 2 doses of it at the time!

But if you read the medication pamphelt that you are one now, I am sure the others are just as scary. She also stated that the depression/Suicide side effect, they could not pin it down to Benlysta BUT since very few people have been on it, decided to put it in the warning box. She seemed to imply to me that this is a much safer drug than some of the others used for treatment in lupus!!!
Lupus Moderater
Cyclosporine, Prednisone, Lisinopril,Norvasc, Mobic, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

New Member

Date Joined May 2011
Total Posts : 2
   Posted 5/15/2011 9:10 AM (GMT -6)   
Thank you so much Amy. I hope the best for you and know that what ever decision you choose will be the right one!

Regular Member

Date Joined Apr 2006
Total Posts : 46
   Posted 5/15/2011 4:25 PM (GMT -6)   
Hi. I know this doesnt answer your question but just wanted to say I am getting ready to participate in a phase 3 drug trial. I just finished with the labs and other tests required for it for final participation approval. I also get a little scared of the side effects that are listed but I just have to trust that we will be closely monitered. I really would like to do anything I can to help us find a way to manage this disease  and improve our quality of life and hopefully someday a cure.
So many lupus patients are so ill and in some state of daily pain. I really hope this will be the medication that will help you get your symptoms under control and hopefully reduce your other meds. So stay strong in this lupus battle and I think that if you are not getting a good response from your other meds then it is worth trying the new med.  

Regular Member

Date Joined Nov 2010
Total Posts : 41
   Posted 5/20/2011 2:55 PM (GMT -6)   
I did do the benlysta for 2 treatments and I didnt have any severe side effects besides my counts going down. they did take me off my imuran due to the fact of my wbc already being low. but I didnt get to finish my lupus is to large of a flare with my heart and I am now on cytoxan.
Lupus, RA,Sjorgrens,antiphospholipid syndrome,Pericarditis,Migranes
AVR & Tricuspid Repair, Paricardictamy 2008

Imuran,Coumadin,Topamax,colchincine,Wellbutrin, Prednisone
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