Hello Fellow Lupey's
My doctor has recently suggested switching me to Benlysta, prednisone can't be my band aid anymore as my platelets continue to drop. waiting to see if the insurance company is gonna pay for this new iv infusion drug and treatments, has anyone else been on this and how did it effect you and did it prove positive...I don't have kidney or liver involvement but discoid is flaring up SLE is calm as far as inflammation of joints but she is concerned on my platelets dropping.
I currently take Benlysta and also have Chronic ITP. I just took my third infusion on Thursday. My platelets do drop after each dose I have had so far. But I take a weekly shot called Nplate to help keep my platelets up. My doctor is hoping my platelets were level off after my body gets used to the Benlysta.
I have been on Benlysta for about 7 months now and have noticed quite a difference, my labs finally look pretty normal. I still have bad days but they are fewer so I call that a win. My insurance covers a good chunk of the cost but it still runs me about 1500 a month after what the insurance will cover. Luckily my Dr signed me up for Benlysta assistance through Benlysta Gateway and that helps to cover $9000 a year in drug costs which should help greatly with the out of pocket costs. For my family and myself feeling better is worth the cost and luckily my infusion center sets up a payment plan for out of pocket costs like this. I hope it helps you and that your insurance covers the costs.
thanks for that, let's hope the costs are low
Shannon said:
I currently take Benlysta and also have Chronic ITP. I just took my third infusion on Thursday. My platelets do drop after each dose I have had so far. But I take a weekly shot called Nplate to help keep my platelets up. My doctor is hoping my platelets were level off after my body gets used to the Benlysta.
thank you for responding, is your out of pocket cost high also?
Pres. stopped working for me. Low blood counts and swelling & joint pain. I have been on Benlysta for a yr. I applied to the B. company for prescription assistance because Blue Cross & Blue Shield could not pay that much. I was re-instated for a 2nd yr. for $9,000 with Benlysta. I hardly ever have swelling. My white count had dropped to 2 before now it is 3-4. It has helped to stablize my lupus counts, so in effect it has given me a longer and better quality of life. I also give myself chemo shots wkly., Planequil, muscle relax.& pain meds 3 times a day. My biggest threat is my low red blood count/chronic anemaiI. I get weekly Procrit shots ($1,000 ea.) which helps to keep my blood count at a manageable low, otherwise I could not drive or work parttime. So it is my lifeline. I feel very lucky & blessed to have such good medical care, loving family, & a few good friends that I have told for support. Check into the Ben. assistance program on line. Infusion takes some people an hr. ----takes me over 2 hrs. with no side effects for me, lucky!. You are in my prayers, best of luck! .H.
I am on disability due to my Lupus SLE, ITP, Fibromyalgia and Sjogren Syndrome.
I was on Benlysta for a while, it just made me weak and tired, didn’t help. But I had just lost my job, and the doctor’s administrator gave me some simple paperwork. The company sent me a credit card and I got it for free. So if you’re really poor, ask about the program.
I believe that once the drug is FDA approved, insurance pays part of it, and it is approved, I read.
I had bad platelets for a long time, and, while the the pred worked at high dosage, it didn’t stay high. So I had my spleen out. This was probably 15 years ago. It was considered the first line of attack, before having to go on chemo for life. It worked, but they let me get very low before doing that. I had it done through 5 tiny incisions, and docs and nurses kept coming by, asking to see it, and it was pretty amusing. First laparoscopic surgery in the hospital.
I should mention I as also on disability, but I wasn’t at that time yet, when I got help with benlysta. If you are on medical or medicare, you aren’t eligible, but try anyway.
I’ve been in benlysta almost a year. I’ve had my ups and downs but for the most part it has kept my flares down and a bit more energy. Sometimes I have side affects that effect my stomach so the dr has given me something for that and sometimes I get so weak I can barely move or hold up a cup. All in all, I rather have the infusion once a month and be down two days than constant flares and horrible prednisone. I hate that stuff n try everthing not to have to be on it if at all possible. I’m permentally disabled too but for whatever reason, I call it a god shot, I’ve not had large infusion bills. Best of luck to you
When I was working I tried Benlysta. I had a reaction to it. I ended up having IV Cytoxan for several months for Hemolytic anemia. I’m starting Cytoxan again for ITP. I also started a course of Rituxan that put me in remission for 9 mos. when I had it again I must have made antibodies to it, I had an awful reaction, the infusion was stopped. I’ve heard good results for some pt’s on Benlysta. Hope it works for you.
I have been on Benlysta for over a year, and have been very fortunate that it has worked for me with virtually no side effects. However it only seems to last for about 3 weeks, instead of four. And for some reason it hasn't helped as much as it used to....I haven't felt as good since my September infusion...but I'm happy that I am doing as well as I am..... I feel any improvement is good. Good luck, and feel better.