Nate how is the Benlysta working out?

Or however you spell it - How are you doing on it?
Erica

Hey, actually, I have not had the chance to start it yet. My first infusion was just scheduled yesterday to begin July 12th. They had to take the time to develop a protocol and receive education training and what not before they could administer it to me. I will be the first one they have given it to. So I'll be sure to give an update. I read it takes like 4months for a response. I will get 3 infusions 2 weeks apart, and then an infusion every month ongoing is what I was told. They infusion should only take approx. an hour. Fun times ahead, I'm pretty nervous but also looking forward to it.

Nate,

This week in the Washington Post there was an article on a woman who has been greatly helped by this new drug - I thought you may be interested in reading it. I think you can paste this in your browser and get to the article:
www.washingtonpost.com/national/health/new-lupus-drug-gets-only-mixed-reactions-from-patients-experts/2011/05/31/AGRffcTH_story.html

In the article, some of the doctors are skeptical because I guess trials have been mixed, but the woman they highlight has gotten her life back.

Good luck - I'll be pulling for you!

Beth

My Rheumatologist brought Benlysta up again at my appointment last week. She said she had a call in to the manufacturer to see if they had any data on Benlysta and serum sickness (since I had it with Rituxan which is also a monoclonal antibody). I don't think they've used it yet in their office either, and can't imagine why she thinks I'm a candidate. I'm sure they have patients worse off than I am. Honestly, I have no intention of trying it. I'm willing to just go with Methotrexate for now.

Let us know Nate! We're all waiting to see!

Good article, Beth. Thanks!

I would LOVE to see a Benlysta commercial.

Well Sandi...Benlysta isn't really for people who are really bad organ involvement lupus...I'm sure it can be used for them, but Benlysta's primary patients are people who have been trying many treatments but are instead stuck on high doses of prednisone and are unable to taper without a flare. So mostly people who have exhausted many of the routine treatments, but whose Lupus is not quite active enough to need the extreme chemo therapy treatments.

Since I've done all treatments except the chemo line drugs and I am stuck on 13-15mg Prednisone Benlysta is hopeful to allow me to taper to 5mg. Make sense?

I wouldn't doubt they make a commercial very soon, but then again, it got so much press and advertisement from in the Lupus community, maybe they don't need to advertise much.

That is a great article, I read usually 30% or so get help, so that article's figures are a little worse off. But I think as it is used more and more those figures will go up because I think studies are always so narrow no matter how thorough it seems to be. Lupus is simply too unique to each individual for a case study to give accurate figures IMO. I could be wrong. I just hope that since Rituxan helped me a bit, that Benlysta will as well. My doctor disagrees Rituxan helped me much, but I felt a lot better when I had it infused even if he didn't see objeective things. And with it worn off, I havn't felt as good and he refuses to give it again yet, but I may bring in my mom and dad to pressure him a bit. I think Rituxan and Benlysta could be a good treatment plan for me.

$35000 for 12 infusions is crazy. I REALLY HOPE that he republicans do not kill Obamacare if Obama isn't reelected because as medications only become SUPER EXPENSIVE because they are so advanced, I am RELY on the change in health insurance laws to no longer allow life time maximums. I am going to blow through my lifetime max if I have to keep getting Benlysta for years. And especially if I need to get both Rituxan and Benlysta, that's a lot of money a year. People who don't understand how much part of Obamacare will help make me so mad because they don't have the compassion to put themselves in another person's shoes. Sigh. It just gets my depressed how split the white house is, and how high school they are all acting. We need to force everyone to be an independent and only vote in accordance to voting polls of the people they represent. I am sick of these elected officials thinking they are elected to vote on only their opinion. When an entire party votes the same way then you know they are not thinking as individuals are simply having a 'measuring' contest.

Back on topic Lol....from the article I like the quote:
"This is the dilemma facing those suffering from lupus. For the first time in 50 years, there is a possible remedy for their fearsome, unpredictable and terribly painful disease. "

Because my rheuma says "Lupus doesn't cause pain". I just want to whap him for that.

Okay, I get that Benlysta isn't for those with organ involvement and severe symptoms, but I also think it's too drastic for me. Maybe I'm not being realistic about myself though since Lupus does affect my entire life. Have you ever tried Methotrexate?

Lupus doesn't cause pain? Where did he go to med school? That is my one, on-going major complaint. It can be debilitating. My life stops because of it, and I'm pretty tough. I take so many meds to control it, but they barely help. I am hoping the MTX will kick in though and make a difference.

I hope that the Methotrexate starts working for you too, Sandi. I was thinking about you when I read the Benlysta article - I feel so badly for you that you are in such pain. What a blessing it would be for you to find something that would take away your pain. Hopefully that something will show itself to you soon!

Hang in there.

Beth

I am noticing some improvement since taking MTX, but also not sure if the weather change is making the difference. I always feel better in the summer.

Hey all, I got my first infusion on the 12th and it went pretty much the same as Rituxan except I got a little light headed and dizzy, but not real bad just a bit in the middle of the infusion. It took maybe 2 hours in the end since they slowed it down with my lightheaded symptom. I fell asleep during some of it too because of the benadryl probably. I did get quite a bruise at the site, as if it irritated my vein a bit, and another brownish mark further up the vein near my elbow so I think that may have been some vein irritation?

I get my next infusion next week tuesday. Doctor said if Benlysta doesn't work we can do Rituxan following, but we cannot do Rituxan and Benlysta together, even if they are given apart. I guess Benlysta has to be out of my system to start Rituxan. Apparently it isn't safe with side effects. There are two other people also now getting Benlysta at my clinic I was told.

Ah my Guinea Pig friend! I'm glad it went well. Please keep us updated. My doc keeps bringing it up for me too - I don't think they have used it before though.

Benlysta is still going well! I have had three infusions and get a fourth next week, and am on a monthly basis now. Benlysta did seem to knock my WBC count down for a very short time, a week I believe (long enough for me to get the flu for three days :sick: ), but otherwise no sideeeffects. I think it is helping me so far, but I am still unsure and will see maybe by the end of the year. I have to get Benlysta reeapproved in October, so hopefully they won't say no. But if they do my work is switching to Wellmark on January 1st, Thank god cause Principal SUCKS BAD. I am glad Principal is pulling out of the health insurance market, because they are extremely picky about everything.

I also hope my work doesn't make me use their cruddy mail-order pharmacy either because they took three weeks to get me my last Lyrica prescription mostly because they simply don't contact me if anything does wrong during a prescription fill, they simply push it aside and forget about it. And then when it did fill, they DOUBLE charged me and deducted it from my paycheck and they'd have left it double charged unless I had called and asked why I had been charged double. Stupid workers at that place, I swear. :evil:

Anyway....THAT was a rant! Lol! Sandi I still suggest trying Benlysta if you can! Maybe even worth a try, as I think we discussed in the past that you shouldnt react to Benlysta like you did to Rituxan because it doesn't have murine DNA in it? I forget. :blink:

www.gekkowire.com/?p=3782

"The General AntiBody classifications:
Chimeric antibodies: 33% Mouse and 66% human
Humanized antibodies: 10-5% mouse and 90-95% human
Fully human antibodies: 100% human
Benlysta falls in the human category, so the side effects are mostly avoided."

www.hss.edu/conditions_benlysta-belimumab-new-lupus-medication-on-horizon.asp

"The Medication: Benlysta®
Benlysta® is a fully human monoclonal antibody that blocks the activity of a protein called B lymphocyte stimulator (BLyS)...."

There ya go! :silly: :laugh: :lol:

I'm glad you think it's helping, Nate. All I have found regarding any drug I've tried is that they just make things worse. I tried Lyrica and at first it was great, first thing that ever really helped the myalgia. After a week or so though the side effects were so bad I was losing it. I'd be on my way home from work and not recognize where I was, really scary things like that. The day I stopped taking it, I thought I was dying. I had to go to bed, and I never go to bed no matter how bad things are.

I am afraid of Benlysta after what Rituxan did to me. I know it's all human, but it's too new for me to trust it.