Author Topic: BENLYSTA  (Read 2744 times)

Dry1000

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BENLYSTA
« on: November 01, 2010, 08:59:46 PM »
Hey everyone

            I was at the rheumatologists office today and got involved in a conversation between two women who have lupus and sjogrens one is participating  in a clinical trial for benlysta and she said her dryness and fatigue are almost back to her pre lupus/sjogrens days. She said she goes once a month for an IV treatment and after three months she started noticing improvements and after six months she said she felt so good she took on a second job. Lets hope this could be for real.
« Last Edit: November 01, 2010, 09:01:50 PM by Dry1000 »

ohiolady

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Re: BENLYSTA
« Reply #1 on: November 01, 2010, 09:04:17 PM »
Wow, very interesting.  Let's hope this is a possible future treatment.

Anna
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Patze

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Re: BENLYSTA
« Reply #2 on: November 01, 2010, 09:35:52 PM »
Oh my, that sounds like it just maybe a promising drug coming down the pike.  I'll keep the old digits crossed that it works well and has no side effects either (a girl can hope, right? ;))!

Take care and thanks for the "scoop"!


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Joe S.

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Re: BENLYSTA
« Reply #3 on: November 01, 2010, 09:52:07 PM »
How does BENLYSTA work?
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). Elevated levels of BLyS prolong the survival of B cells which can contribute to the production of autoantibodies -- antibodies that target the body?s own tissues. Previous studies have shown that BENLYSTA can reduce autoantibody levels and help control autoimmune disease activity.

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Dry1000

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Re: BENLYSTA
« Reply #4 on: November 04, 2010, 10:24:24 PM »
Hey everyone

           Benlysta may be available to the general public early next month, I'm going to ask my rheumy about it next time I see him.

Meld256

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Re: BENLYSTA
« Reply #5 on: November 04, 2010, 10:31:41 PM »
Wow, that is exciting news!  ;) Thanks for passing that scoop onto us.

Thanks JoeS. for the description. We can all keep hope that there is another drug out there that might help us. Gotta keep hope alive...
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puccini914

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Re: BENLYSTA
« Reply #6 on: November 05, 2010, 05:52:00 AM »
I asked my Pharmacist about this yesterday.  He looked it up and it's an IV therapy done in the doctor's office and will cost around $2500 a treatment.  I hate to be a downer but I bet it will be a while before insurance covers this, especially Medicaid or Medicare.  Sorry guys, it's coming out in December, but I think most of us will have a longer wait.  I'm still very positive about tis and as soon as it won't cause financial ruin for my family, I WANT IT!!!  :D

Peace be with you.

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Linda196

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Re: BENLYSTA
« Reply #7 on: November 05, 2010, 06:56:26 AM »
Please also take into consideration that because of it's action, it will not be effective in sero-negative Sjogren's patients, because it's function it to target and "reduce autoantibody levels and help control autoimmune disease activity".
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Daisy1234

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Re: BENLYSTA
« Reply #8 on: November 05, 2010, 08:17:23 AM »
Dry1000:

I had never heard of this drug until I read your post.  This is very encouraging news, as I had pretty well given up hope for anything to turn back the clock to my good ole days.

Thanks for posting this.

inga

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Re: BENLYSTA
« Reply #9 on: November 05, 2010, 08:43:30 AM »
I agree with Linda.  Benlysta, which is a monoclonal antibody drug, will likely be used for those whom have serological markers of autoimmune disease or inflammation.  It also will likely carry the risk of Progressive Multifocal Leukoencephalopathy, which although 'rare', is a devastating price to pay for a 'cure'.  The cost of the DRUG will be prohibitive and due to IV administration the of ADMINISTRATION will be high. 

Right now, PML statistic are released by WHICH disease the victim has, when they are taking the -mab.  For example, to date 3 Lupus, and 3 RA patients have gotten PML  from Rituxan, a similar drug to Benlysta.  It is very hard to know, when some one with Lupus gets encephalopathy what it is due to.  Rates of PML are still evolving.

Raptiva, a similar drug for Psoariasis was pulled off the market due to an unacceptable level of PML occurance.....seems to me, that few people die of CNS issues with Psoriasis, but many more with Lupus, so those actual occurances of PML may be way off in diseases that have CNS involvement inherent in them.

When we talk Benlysta, we are not talking about 'dry eye' relief....it is for those with the probability of serious vital ORGAN involment.  This drug would never be considered for the controversial diagnosis of 'seronegative Lupus'.

I can't emphasize enough, that one understands WHERE their SICCA comes form, before they subject themselves to potentially fatal consequences in the search for a cure for a disease they don't have.   Sicca comes from many things.  If one's B cells are NOT high, why would any one take this?

navydad

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Re: BENLYSTA
« Reply #10 on: November 05, 2010, 08:44:44 AM »
I dont think anything can turn back the clock to the pre days of AI disease, this new drug looks to only stop the disease process,,also think about it,, if the disease has destroyed healthy tissue, I dont think it can reverse the process,, I was reading the story about this drug,, again,, its anothe immuno suppresent,, (IE: INFECTIONS), but if it works,, and makes like a bit easier I;m all for it,, I wont get it,, i;m done with this stuff,, and I;m dereonegative anyway,, sorry my post are gettting harder to read,, its just that my fingertips are completely numb now,, and I just dont have the energy to go proof everything,,

inga

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Re: BENLYSTA
« Reply #11 on: November 05, 2010, 09:02:45 AM »
Benlysta is very similar to Rituxan, but targeted to the Lupus audience.

navydad

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Re: BENLYSTA
« Reply #12 on: November 05, 2010, 10:49:07 AM »
I wont be buying a ticket for that show Inga and sit in that audience,,, people have to remember that a lot of this stuff we chove in our veins is toxic,, destroys the  immune systems,, and the side effects might be worse then the disease, I learned all this the very hard way,,
  Pulse steroids,, Chiari Surgery,, Bacterial Menigitis, Rituxin,, and i;m worse off then before,, but THIS IS NOT MY FAULT,,, I pout my trust in the people who go to school for this kind of stuff, so now i;m getting very Doctor phobic,, but if I dont get something done soon,, i;ll end up bedridden from this neuropathy,,

inga

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Re: BENLYSTA
« Reply #13 on: November 05, 2010, 10:56:12 AM »
Unfortunately, there is really no cure for neuropathy.  The biggest guns are IVIG, which you didn't like, and Rituxan which seems to have left you worse for the wear.  Rituxan can have nasty repercussions for a year or more after discontinuation.

IVIG is far from miraculous, results are very subtle.

Usually, SFN is slowly progressive.  There are other neuromuscular syndromes and diseases which are not.

navydad

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Re: BENLYSTA
« Reply #14 on: November 05, 2010, 12:06:34 PM »
I think I have one of the others,, its not being very subtle,, it wasent like I didnt like IVIG,, I thought at the time it wasent doing much good, but I woulld give anything to go back on it and try it again,, but Mayo said no more of that,, and as hard as I have pressed for it,, i;m getting no where,, I keep getting Mayo said no,,, tried a end around but that didnt work,, but again,, this neuropathy isnt being very subtle,,I had the rituxin back in April,, I doubt its out of my system yet,, and wonder what it did to me .