Third infusion of Benlysta

I just don’t get it. I took a little nap when I got home n no side affects. First two were mild side affects. Dr said he is worried that my body should be responding by now. He felt so bad for me today. He knew when I walked in the door something wasn’t right. I’ve been in a huge flare since Monday. Body still feels weak but trying to get on my feet again. He is going to talk to my Rumy n figure out something together. I have the best Hemo and Rumy. I trust both Dr evenly. What r your thoughts. I’m so frustrated

Hi Poker face: Sorry to hear that you feel like the Benlysta is not working for you. I know you said your Dr. said the treatments should be working by now, but my Dr. told me that they can take up to 6 treatments before you notice a difference. I have had 9 treatments, and feel much better, of course we all know that each individual's chemistry is different and will take time to see a difference. Are you on any others meds? It's good that you have confidence in each Dr. That makes such a difference in your care. I also like my Drs. I'm glad you only had mild side effects. I also had mild side effects. I have a girlfriend that gets very sick with them, but she's doing better with each treatment. We both experience flares about a week before the next treatment. I will be interested to know how you make out. Good luck, and feel better.

Now that you say that I did have a have a huge flare all week before my third infusion. I’m just scared to keep doing it. I am scheduled for three for the next three months. We shall see what they decide next week. I am on dolobid and was on aralen. I’m on a saliva pill and prescription eye drops. They want to put me on prednisone again and I keep refusing. I gained 80 pounds last year and finally lost 25 this year. Thanks for your input

I have a good friend who just went through a series of Benlysta, Her results were so much like yours, so she stopped after a few months. Different things work for different people. She even tried for an extra month just hoping it would eventually kick in, but it made her so deathly ill, she couldn't keep it up. I hope you will get comments from people here who have tried Benlysta. You can also type that into the search box on the far upper right, and many discussions about Benlysta will pop up.

I'm sorry for your pain and frustration.

Ty for the info

hi Pokerface, I am in the process of trying to decide if Benlysta is working for me or not. I have had 7 treatments so far. The first three or four were awesome! I felt great! The last few months, not so much. I did skip the treatment for May to see how I would do. So far I have not noticed any difference. I do need to add that I started prednisone shortly after my last treatment because I just didn't feel Benlysta was working for me. I believe the prednisone has made a difference in how I have been feeling. I am not a fan of prednisone but I have to tell you that I had been in a flare for about four months before I started that. Now I am feeling a bit more human. I know my story is not much help to you but I know you are asking for different thoughts so I thought I would add mine. To be honest, I believe I will try one more treatment just to be able to make a final decision about Benlysta. Like you, I had high hopes for it. I pray your doctors can find what works best for you. Hugs.

Your comments did help. Thanks. I really appreciate it