Benlysta???

AnnInTexas

Hello all.

I've been diagnosed with Lupus SLE since December of 2011... but only recently have I really started having some real symptoms. I have the painful joints, the extreme fatigue and the rash. I've been on Prednisone, Maxzide, Plaquenil, Imuran, and Meloxicam. (Not going to list the LOONG list of vitamins/supplements!)

I have a new rheumatolgist I really like a lot. He told me this morning he really thinks I should try Benlysta. Seems pretty scary, though. He says the plan is to do this infusion, with the hope I would be able to stop all of the Predisone -- which is totally thwarting my weight loss efforts.

Anyone have any experience with Benlysta? It's pretty new, I understand.

Ann

sewmom73

Sorry, I can't be much help to you, I don't take that one (I do take plenty of other ones) I HATE prednisone, but if I didn't take it I don't think I'd be able to move. Let us know if you do, decide to take it how it works out. Best of luck to you.
Sharise

AnnInTexas

Sharise, I met with the doctor earlier this week. I explained to him that I just didn't want to be one of those "people" hooked up to an IV for half a day. I think I am just having trouble coming to grips with my disease. I was brutally honest with him and said every time someone recommends some kind of support group or thread to join for Lupus, I end up talking to people who are pretty much home-bound, on disability or retired. I work full time and am currently working on my Master's Degree. I just don't see myself as sick, but when one of those flairs hits me, it's a massive reality check.

Anyways, he told me he really thinks this drug would be good for me, since I have such a different outlook than most of his Lupus patients. I don't want to be on disability. I want to keep my life going. So in the end I agreed to give it a whirl. Apparently is a very expensive drug. They have to get prior approval from my insurance, to make sure they will cover it. They said it should take about 8 weeks... so I should be getting my first infusion sometime in September. I'll certainly let you know how it goes.

Ann

MultiGoddess

The thing with infusions are that you are only "hooked" up typically (after the loading dose) once a month or less. My mom has PsA, and has been getting Remicade infusions. It takes her 2-3 hours once every six weeks. Her quality of life has improved so much. It is a very expensive drug because it has only been out about a year, it was actually the first drug specifically for lupus in over 50 years. I am currently receiving SSI, but I am also a full time student. I will be wrapping up my AA in March and starting my BS a week later. I think that lupus is a disease that you never really know what is around the corner. I have been diagnosed since I was 22, about 6 years now. I have had several periods of short remission, but mostly I have been in a flare. I also battle hypothyroidism, diabetes, mental health issues, RA, OA, fibro and so much more. I have been working very closely with a friend that is a holistic health practitioner who also has lupus. There are many many many people in the world that have lupus and are not on disability or home-bound. I commend you for keeping your life going. I am doing the same as much as possible. I think that everyone with lupus is different, and what may be good for one person, may not be good for another person. Some people are sicker than others, and they need disability to pay for their illness, and typically all the other illnesses that tag along.

EPhinn

I haven't been on Benlysta, but I was very excited when it was approved by the FDA. I just finished a treatment for my liver, so that hopefully my body would allow a more proactive approach with my lupus. When I see my rheumy again, I will be asking about Benlysta as an option, but for now I'm just on Plaquenil, Cellcept, Neurontin and a couple blood pressure medications.

AnnInTexas

I'm actually scheduled for my first infusion of the Benlysta tomorrow, so I'll report back how it goes.
The infusion coordinator told me the worst side effects include massive exhaustion, possibly a rash and a headache. She told me they will give me Tylenol and Benydril when I get there, and I should have some on hand at home, just in case.

I'm really hoping this works - though I'm sure it will take several infusions before I'm able to tell. The first 6 weeks you have to do "loading" doses, so I will be getting an infusion every other week... then after that I'll get to go to once a month.

ammymickens

BENLYSTA is a human monoclonal antibody that specifically recognizes and blocks the biological activity of B-lymphocyte stimulator, or BLyS® (pronounced bliss), a naturally occurring protein which was discovered by scientists at Human Genome Sciences (HGS). BENLYSTA targets specific immune cells, rather than the blanket approach of other therapies which suppress the entire immune system. Currently approved medications for lupus are borrowed from other diseases and conditions; other treatments are used off-label, which means they were never approved by the FDA for lupus. Many of these treatments have serious and devastating side effects Know more here http://forum.internationaldrugmart.com/drug-information-f5/benlysta-side-effects-can-anybody-share-your-experience-t6648.html

TXCruiseGal

Just to update you all on my progress:
(Yes, I changed my screen name and opened up a new account -- I really needed a reset on everything in my life)

I have had four infusions of Benlysta. I stared with three "load in" doses that took place every other week. Now I am on a once a month infusion.

The only side effects I've noticed is some general body swelling immediately after the infusion. I think it's all the fluids that are added to the IV bag. The swelling goes away by the next morning.

I'm also kind of tired the day after the infusion. I learned a very hard lesson last week: I had my infusion at 2:30pm on Thursday. That night, hubby and I went to the Pink concert that didn't end until close to 11pm. The next day, I could hardly get out of bed! I truly felt like I had the flu, just without the congestion, coughing and other nasty side effects.

The positive effects:
1. I no longer take Prednisone -- that was huge for me! I'm now back to losing weight... so far about a pound a week.
2. Since I started this in October, I've not had one single flare. I was getting one at least once a month if not more, depending on how much I overdid it.
3. My most recent labs showed some lower numbers in overall inflamation.

So for me, it's all working out. I'm sure each person is different.