U.S. clears new lupus drug, blockbuster sales seen

ca.news.yahoo.com/lupus-drug-wins-u-ok-blockbuster-sales-seen-20110309-143427-259.html;_ylt=AvHpR2FKMEOJohBkDYJqU7orssB_;_ylu=X3oDMTNhcXNzcms1BHBrZwMyMTNkNTQzYS1lY2MzLTM1NzktYWVlNS03MmMzNTA0NWIxY2QEcG9zAzEEc2VjA01lZGlhSnVtYm90cm9uBHZlcgM3YWE1MDcxMC00YWIwLTExZTAtOGZkZC1kNWY2MGRjYjU5Njc-;_ylg=X3oDMTFjNjVhOWUzBGludGwDY2EEbGFuZwNlbi1jYQRwc3RhaWQDBHB0A3NlY3Rpb25zBHRlc3QD;_ylv=3

"U.S. clears new lupus drug, blockbuster sales seen"

Dear all,

I got some info about new Lupus drug, Link is given above and you can google it with above subject.

It's a human monoclonal antibody. I don't know if I'd be able to use that or not since I can't use animal monoclonal antibodies. Interesting.

Hey long time no post for me! I have been simply sitting at about 13 to 14mg Prednisone keeping flares away for months but my Rheuma wanted me at 10mg all along but I did not want to be having flares and missing work so I figured a constant higher dose of a few more mg was better than having much higher titered doses to treat flares as they occur. I am dropping to 11mg noiw and 10mg soon as I see my rheuma on the 14th of April. I want to know though if I need to have an active flare to get Benlysta or if it is enough that I am stuck above 10mg Prednisone. I read Benlysta can be prescribed for people who need it to lower an unsafe Chronic high dose Prednisone dose? Do you think my rheuma will just say no? As I thought Benlysta stops Blys protein to reduce active Bcells and therefore prevent a flare rather than treat flares. As if I have lower Blys, then I could taper Prednisone and see if I can get to a lower dose but not necessarily need to be ill, get Benlysta, see if the flare calms, then reduce Prednisone? Make sense?

I'm not sure, Nate, and hey - it's great to see you again! I've been thinking about you!

I've been on 20 mg's of Prednisone for a few months (self-prescribed) and just tapered myself down to 15. It's the only way I can get through the winter and still be able to move and function. I would think that in order to get Benlysta, you'd have to have active Lupus. By active, I mean abnormal titers of antibodies in blood work. My antibody levels have been fairly normal even though symptoms are present, and I still have a hard time convincing anyone that I feel so crappy. I doubt I'd be able to get Benlysta under these circumstances and not sure I'd want to anyway because of possible side effects.

How's your blood work been?

Hi all,

I'm in Canada, where Benlysta is still pending approval (but according to most online sources, will be available here by the end of the year).

Like Sandi, I had a severe allergic reaction which can most likely be attributed to Rituximab (animal monoclonal antibodies). I did receive all 4 infusions, and my platelets went from ~20 to 230s.

I spoke to my rheumatologist a couple weeks ago, asking if I'd be a candidate for the new therapy. I'd love to get off Methotrexate. She said she didn't know yet, and would have to wait for more information to come out, and approval to happen here.

Hey, I been thinking about you guys too But I did the same thing you have done Sandi, took a self-imposed Prednisone induced vacation lol. I saw my Rheuma today and got some answers, he does not have a lot of faith in Benlysta helping many people. I am optimistic, and it may not help me at all, but I said in reply "Rituxan had a lower chance of being effective and it did great things for me." And he was kind of quiet to that. And he said that if I want Benlysta, then I have to taper Prednisone 1mg a month, and if I get a Lupus related fever flare to prove I am not in a random remission, he will give Benlysta after a fever shows. So, if things go as they have in the past, I won't even need 1-2months to get a fever. We'll see.

I also have a ton of trouble getting my Rheuma to believe many of my symptoms are related to Lupus unless I have a ton of labs positive. I think research is not concrete enough to explain how much Lupus effects the body and how many symptoms it causes at a microscopic level. I can only go by how I feel inside, and the patterns I feel.

You know, I wonder the same thing myself. Labs have been pretty good for a few years, but the symptoms have not gotten any better. It doesn't make sense.

You lost me on the 'self-imposed Prednisone vacation". Do you mean that you took more, or less? I bumped my dose up a lot yesterday because I was having a rotten day and didn't know how I'd get through the rest of work. I took 10 mg's in the a.m. but felt so horrible that I took another 15 at 11:00. Within 1/2 an hour, I felt much better. Gotta love that stuff! Today I was able to go back to 10. I had been on 20 all winter, but began to taper a few weeks ago.

I meant that same thing as you. My doctor wanted me to stay at 10mg and see if I flared again, even though we had done nothing new since my last flare except do a high dose of prednisone and taper back down to 10mgs, and if I flared again I would have just repeated a round of prednisone again. So I chose to just keep my Prednisone at 13-15mg until Benlysta was an option.

Lots of pill juggling, but ya gotta do what ya gotta do. I'm just very grateful to my Rheumatologist who gives me enough Prednisone per month that I can dose it myself. I am going to see a new Rheumatologist this month though. My current doctor is over an hour away and it's just too hard to get there and I practically lose a day of work. We just got two Rheumatologists in my area - 10 minutes from my work (we didn't have any), so I want to switch. I'm just afraid that the new one will want to change my meds and I don't want that. I have to call and get my records transferred and I'm afraid to do that until I see the new doctor, but they understandably want the records before she sees me. I don't want to burn my bridges. I don't know what to do.

Nate - I understand your doctor wanting you on the lowest possible dose to control things, especially at your age. But I also understand the need to up the dose to get through the days. I try to stay at the lowest possible dose, but I also have to function. I imagine you go through the same thing.

Well, I saw Rheuma on Thursday, and he said he wanted me to flare before giving me Benlysta. I was telling I already felt symptoms popping up and it is inevitable I'll flare at 10mg, but he said all those symptoms were not related to Lupus.So this morning I wake up at 2am and feel ill, had to call in ill, which is never fun. And all my symptoms got biggger, the aches and pains got worse, the carpal tunnel got worse, I got a headache going, a bit of stomach intolerance, and some pain with deep breaths, scalp hurting. All these things that happen every flare, and he still just want to focus on a fever as my main symptom of a flare. So my fever is bouncing around 103, was 105 at one point. Seeing the doctor today in an hour or so to get the fever on record. Then call the Rheuma and schedule Benlysta. I didn't think I'd flare this quick, but I guess I forgot how fast a flare comes on. I can be fine the night before, then a few hours later everything is exploded. I hate it. Missing probably 2-3days of work too.

A fever is not a valid thing to base a flare on. I have never had a fever due to Lupus. I often feel like I do, but when I take it, it's below normal.

Are you sure you don't have a virus? That's a pretty high fever for a flare.

Yikes, sorry to hear you're having to go through a flare to receive treatment. Good luck, and feel better.

Yes.Fever is a definite symptom of Lupus. We always double check for an infection or a virus, but I am very immunosuppressed and only Lupus is able to push up a fever as high as I go. And the high fever has appeared with every one of my flares. He didn't used to feel it was, but finally understood it was as it also corrolated with positive labs. So yea, it's not a common symptom, but he agrees on this one point that it is my unique symptom. Any other fevers I've gotten from an infection has always had trouble getting up over 100degrees, but Lupus just shoots up.

My doctors office is trying to get Benlysta covered by my insurance, will have to see if they think up some reason to decline it because it will cost a lot for a long time to them. Nurse said that they havn't given it and will have to write up a brand new protocol for it, and they've called around and havn't found a clinic that has experience with it yet. But there always has to be a few pioneer patients. I'm guessing there are plenty of patients battling insurance.

Oh Nate, I wasn't saying that a fever isn't part of a Lupus flare. I was saying that a person can have a flare without a fever, so it stinks that your doctor needs to see the fever before he'll consider the fact that you may be flaring.

Good luck with Benlysta. You'll be our first if you get it. Let me know!

I read it fast, now that I went and looked at your message again. I thought at the time it was odd you thought it wasnt a valid symptom lol.

Well that'll teach ya!

<whimpers> No spanks, momma, no spanks! Pleaaaasseeeeeeeeee!!

Who you callin 'momma'!