Good day to everyone. I hope you are all doing well. I want to know if anyone has heard of or tried the drug Benlysta. I have been on it for about seven months now. Felt like it helped early on, but now not so much. Just looking for similar experiences and opinions.
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Hi, ive been on benlysta for a lil over a year now, I dont feel like its doing a whole lot for me. I still have severe fatigue and pain, im gonna keep trying tho! Its so expensive so I hope for some improvement!
I am supposed to start Benlysta in 3 weeks and up until now I had heard really good things about it. I Pray for better outcome for us both soon!
My Doctor just recently decided he wanted me to start using Benlysta. It is extremely expensive and since I’m not working and I am waiting on a determination with SSD, I cannot afford it. Fortunately there is a program to help (they have other meds in the program as well). If you have insurance, there’s a plan to help if your co-pay is high and you fit the criteria. There’s also a Patient Assistance Program for people who make below a certain amount or people who don’t have an income, where they’ll get it free. I am so anxious to just be approved by SSD so I can obtain insurance already! Any way, for those of you that want to see if you’re eligible and want to fill out the application; here’s the info…Go to www.Needymeds.org scroll to the middle of the page to enter the name of the drug, click on drug search button. When the next page comes up, scroll down to the field that says Patient Assistance Application. Click on the medication form immediately below that. Print the form & follow it’s instructions. If you have any questions, just call the number on the form. When I called them they were very nice and very helpful and told me I would be approved due to my situation. If you have no income, you need to include a letter explaining how you sustain yourself. And make sure your doctor includes a written subscription when he faxes the form to them. I hope this helps many of you. I know the struggles & expenses we go through.
Hi I have been on Benlysta for a year now. I have found that it has helped me greatly. I am one of the lucky ones that my insurance covers it. I pay nothing for it. Thank goodness because it is so expensive. I still feel tired and my fibermylogia bugs me some but. It is not like it used to be.
Bless your hearts! Benlysta literally killed me and I had such high hopes for it. I was the first patient that tried it and my rheumy and I were so excited to see if it would work for me...no such luck. After 2 infusions, I got a sepsis infection and ended up on life support.
I pray that is continues to work for those who can tolerate it!
Lori
Hi! I was on it for seven months and the only benefit I got from it was it cleared up my cns lupus. That is not one of the things they claim that can be helped. But it cleared my brain fog and confusion. However my pain and fatigue were still terrible. I’m now on rituxan. I hope you have good luck with it. 
Take care,
Wendy
HI everyone, I really appreciate the feedback on Benlysta. Sounds like quite the mixed bag when it comes to this drug. I too had high hopes for it but as I mentioned before, I am just not having the same positive effect I first had. Loriken214, I am so glad you were able to recover from the effects of Benlysta. How terrifying for you and your family. Thank you for the facebook information poobie. I will check it out. I am skipping this month of infusion and I will see if I have any difference in how I feel. I appreciate all of you. Take care! elfin66 (Lisa)
I just had my ninth treatment last week, and for me I think I have been doing better on it. Although, when I'm one week out to get the next treatment I go into a flare.... I saw my Rheumy today, and he seems pleased with my numbers and has signed me up for another 6 treatments. I'm hoping for the best.
I have completed my first two doses of Benlysta and so far I have not had too many side affects. It does scare me though because this drug is so new and as the other person stated, it almost killed. I'm noticing not as intense flares and my spirits are up a little more. Don't get me wrong, I have something hurt everyday. I just hope the Benlysta will calm down the flares and that it will help with the joint and muscle pains. My third infusion is a week from Friday and then I will go monthly for June, July, and Aug. I do fear more side affects this next treatment because more happened from the first to second but I think of it this way...if I don't try it, I'll never know if it could have worked. If I do try it, and something bad happens, I am in the hands of the Lord of how each infusion should go. It is extremely expensive and although my ins covers it the treatments will cost me $5,000. Even though I am on SSD, I do not qualify for other programs because my husband makes too much money according to their criteria. Hope this gives you a little more insight.
Please everyone, know that this forum is to inform, share and ask questions......Not to scare people. Each of us is different, and will have different experiences on all kinds of meds. Just because one person has a bad experience, doesn't mean another person will. Loriken214 that had a bad reaction to Benlysta, is not an unusual case. Many people are allergic to meds....I for one, am allergic to so many meds I nearly freaked out when my Dr. wanted me to try the Benlysta. But I was fortunate enough to tolerate it. I have been lucky to have no reactions to it, other than some mild nausea. So let's all have the best day we can, help and support one another. Have a great day!!!!
I'm not trying to scare anyone. The question was asked and I told the truth. My SLE Lupus is severe and my rheumy has tried everything on me. We hoped that Benlysta would be the answer for me and it wasn't. There are serious side effects, but you never know if it will work unless you try it. My rheumy and I took that risk.
Lori
I am waiting to see if i can get help with the med so i can start it. I am glad you started this discussion. I am worried about it as i have been having pleursiy and kidney problems lately
Lori, I didn't mean you were trying to scare anybody....I'm sorry that a med your Dr. recommended didn't work....that's the problem with all of us. What works for one, doesn't work for another....and THIS is what keeps drug companies in business !!!! Let's all try to keep the info coming in...that's the only way we can learn from one another. BAK
loriken214 said:
I'm not trying to scare anyone. The question was asked and I told the truth. My SLE Lupus is severe and my rheumy has tried everything on me. We hoped that Benlysta would be the answer for me and it wasn't. There are serious side effects, but you never know if it will work unless you try it. My rheumy and I took that risk.
Lori