I have been looking everywhere and asking and haven’t found anyone to know v the answer to my question which is once we get started on benlysta, how long do we stay on it. Is there a number of infusions all together or is it just a cpl of infusions and then stopped?
Hi Rachel
I just got approved and start in a couple of weeks. I went to the benlysta web site and it looks like it depends on the doctor.
K. I will have to ask my doctor. Thank you. Good luck to you
My rheumy told me I would stay on it for life. I don’t know if that is true for everyone. Also, I am not on it any longer because it didn’t work for me and I am now on Retuxin, which seems to be working better with no side effects.
I have been on Benlysta for almost 2 years. It has been very helpful
From what I understand is that you are on it for life, if it's working for you. I've had 11 treatments, and it 'seems' to be working pretty well, so far. I'm excited about it, and hope to continue. The question I haven't been able to find out the answer too, is how long will Medicare continue to pay for it, since it's so expensive, and with the changes in our National policies. If anybody knows please reply. Thanks, and be well.
My Rheumy & I have talked about me trying it this fall. Are there any bad side effects?
Nicole so far the only side effects I’ve gotten is headache,ensomia but I’ve just have had one treatment so far. I’m going every two weeks. Good luck.
Thanks Rachel. I’m looking forward to trying anything other than these steroids.
It likely depends on the patient and the doctor. I was told I would do infusion twice a month for two months and then do once a month for four or five months. Then doctor will assess the situation from there.
I had no noticeable side effects after first treatment recently.
Nicole johnson said:
My Rheumy & I have talked about me trying it this fall. Are there any bad side effects?
It made me very nauseated.
I had some nausea, but not bad. Each person is different.
I have been on since last Dec. noticed significant increase in energy. Still have pain but having energy is great. Have had no side effects. Trying to get up nerve to start tapering steroids after being on for 18 years. Maintenance does is 20mg. Wish me luck!