Benlysta

General
1

Good day everyone

Last year I was looking into Benlysta and their were several of you taking it. I decided to start it an have been on it a year now. I was wondering how the rest of you are doing on it.

2

I have also been on the Benlysta for about a year..... I have been doing fairly well on it. BUT one about the week before the next treatment I start to tell that it's time!!!! I start not feeling as well, and sometimes am doing very poorly.

I was wondering also what other people were experiencing.

3

I just had my follow up and my blood work came back with high inflammation. I am currently onCelcept but obviously it’s really not helping. She wants me to consider infusion treatment. Benlysta was her first choice. I am bit afraid, what are the side effects, how has it helped you? Is it better than a pill form medication? I have vasculitis that the Celcept is managing but not helping my joint pain and fatigue. I feel that I am loosing strength and not able to move at times. Part of my body goes numb. On Soma, Plaquinel and high dose of naproxen. Can Benlysta replace all these meds and help me get to remission? Is this what you guys experienced?

4

You can go to their site and it will give you all the details including side effects. I don't know if you could stop any of your meds I would discuss it with your doctor next time you go they can also give you a hand out on it.

I can tell about a week before its due by the way I feel and often send a good bit of that time in bed. I can tell a difference since I have started taking it especially with the fog.

5

I was going that route but went to Boston. Ma and they suggested methotrexate and chloroquine. I am doing good

6

My doctor is pushing benlysta. I’m not liking patient feedback, very different from what doctors say. What is methotrexate and chloroquine and is it offered here?

7

Hi cindy

The first 6 month I took it I could tell a big difference and it was great. I am still taking it and do not plan to stop. I have other health issues that contribute to my problems. We all have to make our own choices discussing your concers with your doctor may help you decide. You can look the other 2 up as methotrexate is used to treat several things. Make sure to look up the one for arthritis as in higher doses it is used to treat some forms of cancer. We have had several people that are on that combination.