Is anyone here doing Benlysta infusions? If so, how long did it take to work? My old treatment is doing nothing for me and I just started the infusions last week. I'm just wondering how long it takes because I'm tired of being tired and of being in pain. I'm very discouraged right now.
I did the benlysta infusion. I started feeling better by the second infusion. I really started feeling better by the third, but it triggered shingles and a degos reaction. It’s nothing that could have been predicted or prevented. But the benlysta was really helping. Hang in there, love. It takes about 6 infusions to fully feel the benefits. But by 3, I had more energy, less joint pain and skin sensitivity, and less inflammation. I was pissed I had to stop. I start cytoxin tomorrow to try and battle this degos. Then we’ll work on the lupus. I pray the benlysta works for you.
I’ve been on benlysta for almost two years. I was one of the first in Louisiana to receive it. Although it has made me feel better I have yet to go into any type of remission. I’ve seen others around me go into complete remission with just three to six months of treatment. Be patient. Hopefully you will be one of the lucky ones!
Thank you, Jen and Jasmine! I'm hoping that it works for me too. I talked to my Rheumy yesterday and she said that Lupus doesn't cause pain, so something else must be causing my pain. WHAT?!?!?!?!? Have you ever heard of such a thing? I maintained my compusure, but I'm going in for labs this afternoon to check for a Vitamin D deficieny.
Oh ,and Jasmine, I'm in Louisiana too!
If your Rheumy said that Lupus doesn't cause pain...RUN! Run to another Rheumy LOL!! That is the craziest thing I've ever heard!
Yes. It causes pain. Lol. It’s one of the main symptoms.
Heidi, that Dr. needs to be disbarred! Lupus=inflammation, which = pain. If you ever leave that Dr. I would write him/her a letter and try to educate him/her. Well, maybe even do it when you are still his/her patient. Lupus is one of the most painful diseases so I can't imagine where he/she was trained!!
I'm really in disbelief about the whole thing. I thought she walked on water up until this point. Aside from this MAJOR shortcoming, she's been good to me. I'm conflicted because there are very few rheumatologists to see in SE Louisiana. And I've had much worse than her. . . . It was just a weird thing to say. At my next appointment, I will be sure to bring up and will try to see if I can get her to clarify her "Lupus isn't Painful" statement. The more I think about it, the angrier I get!
Sheila W. said:
Heidi, that Dr. needs to be disbarred! Lupus=inflammation, which = pain. If you ever leave that Dr. I would write him/her a letter and try to educate him/her. Well, maybe even do it when you are still his/her patient. Lupus is one of the most painful diseases so I can't imagine where he/she was trained!!
Dear Heidi,
It is so so hard to be patient with this disease , I hear you!! I was on Benlysta and although it was no " magic cure" I do think after a time it helped
Hi Heidi,
I am on benlysta right now too. I did it once before, but stopped after 5 infusions. I was going to go back to Rutuxin and then I read that there were results that showed Benlysta was working better for patients that stayed with it 6 months to a year. I decided to give it another try. I did not show signs of remission in those 5 treatments. What I noticed most is, IF I had energy to do something I noticed that I had more staminia and better concentration for sticking to whatever I was doing. I am hoping for better results if I stick to it longer.
been Ive doing infusions for about 8 or 9 mos now, and so far, nothing. My Dr said hope by the year mark well see some improvements??? Hang in there!! I kno it’s hard sometimes but really that’s all we have is hope!! I’m trying too stay hopeful! It’s very hard…praying for you