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Txredhead
05-04-2011, 09:10 PM
Benlysta is the first new drug approved for Lupus in 50 years. Itís not for everyone with Lupus, but for those who can benefit, thatís awesome! Benlysta signifies progress. We hear all the time about new advances in joint replacement, heart disease or erectile dysfunction. However, it is rare that you hear of autoimmune progress. The arrival of Benlysta on the market shows that, even slowly, progress is being made.

Benlysta gives me hope. Itís shows me that someone, somewhere is thinking about what can be done for Lupus. They may find more uses for Benlysta as more is discovered about autoimmune diseases. Benlysta shows that something is changing.

I may never benefit from Benlysta, but Iím glad to see it here. Who knows what the next development might be?
Article written by Staff Writer, Agnes Reis with ButYouDon'tLookSick.com

Peridot20_Gem
05-05-2011, 11:04 AM
Well i've checked this new drug out and i don't think i'd like to try it, as it seems it's got a long way to go before being trustworthy to Lupus patients, with what we suffer already.

Added info on Benlysta

March 9, 2011 -- The FDA has approved Benlysta, the first new lupus treatment in 50 years.

An FDA advisory panel last November voted 13-2 in favor of approval. But the panel noted that Benlysta is no wonder drug. Overall, it offered a modest benefit. Only 30% of patients who took the drug in clinical trials saw a benefit.

And because the drug weakens the body's immune defenses, it comes with serious side effects. These include infections, cancers, depression, and suicide.

But the announcement comes as welcome news to patients and doctors frustrated by the limited treatment options available to lupus patients. And it comes even as scientists gain a new understanding of what lupus is, what goes wrong, and where researchers should look for new treatments.

What should lupus patients and their families know about Benlysta? WebMD consulted Eric L. Greidinger, MD, chief of rheumatism and immunology at the University of Miami Miller School of Medicine, FDA briefing documents, and the FDA approval announcement.

tgal
05-05-2011, 01:04 PM
I absolutely would give it a shot! I know slim is about to start on it and I would be willing to try anything at this point. No drug goes through the panel without opposition and there are several threads on this site where information has been posted about this drug. It is not for everyone but I too am very excited about it!

steve.b
05-06-2011, 05:30 AM
as txredhead has said.

it shows advancement in the research.
this must be a plus for lupus.

Peridot20_Gem
05-06-2011, 01:25 PM
I absolutely would give it a shot! I know slim is about to start on it and I would be willing to try anything at this point. No drug goes through the panel without opposition and there are several threads on this site where information has been posted about this drug. It is not for everyone but I too am very excited about it!Mari,
Do you know what put me off the thought of cancer and seeing quite a few in the family die with it but if other's are willing to try it i wish them all the best and that goes for slim.

Txredhead
05-08-2011, 01:14 AM
Keep us posted tgal. I think it would us all realize the benefits, or the side effects more if we knew someone who was gonna take it!

Txredhead
05-08-2011, 01:15 AM
Peri, TY so much for added additional info!!

tgal
05-08-2011, 06:35 AM
Hi Terri,

I do have a fear of cancer too. I was my mothers caretaker for a year and I watch her life slip away. It is why I really didn't want to take the MTX because it ups your cancer rate as well. I think the information you shared is wonderful and will allow people to make a much informed decision however for me, If they find that it works in people like myself I would try it. While I don't want cancer I would take the chance in order to have my life back for whatever amount of time.

Peridot20_Gem
05-08-2011, 07:39 AM
Hi Mari,

If they told me tomorrow i had cancer i'd take it in my stride but i know i won't take a drug that could up the risk quicker and it's not just that it's the part mentioning suicide, i've done to much of that in the past and would'nt like to be in that position again but if other's find it a good drug for them fare play at least it's helping them.

tgal
05-08-2011, 01:12 PM
Hi Terri,

I understand that completely. It is why I put off taking the MTX because of the cancer risk. Each person has to decide what is right for them. I would do it and you wouldn't. Neither of us is wrong we are simply doing what is right for us

Peridot20_Gem
05-08-2011, 11:49 PM
Mari,
Since this lot as got worse on me, then trying the plaquenil which did'nt personally suite me either but as you know i got strong side affects from it, i think we all know what we can cope with besides putting up with the lupus alone.
My rheumo as offered me the choice out of 2 tablets for my skin as that's gone past steriod creams now and i put in my thread which one i'd choose but since adding the thread i've thought alot about the symptoms and it's like i'm banging my head against the wall deciding shall i take it or not.

lizbond36
05-09-2011, 05:20 AM
I am staying with this med Plaquenil, I have only taken it for a week, but I have no side efforts with it beside Dry mouth. I believe if you have cancer in the family you chance's can increase. No thank you :-)

Liz

tgal
05-09-2011, 06:06 AM
I am staying with this med Plaquenil, I have only taken it for a week, but I have no side efforts with it beside Dry mouth. I believe if you have cancer in the family you chance's can increase. No thank you :-)

Liz

Oh Liz you should absolutely stay with plaquenil if it is working! As Terri said some people have side effects from it but I, like you, didn't really have any. It takes several months to get the full benefits from the plaquenil but it did SO much for me for a long time. The new drug is not for people that are getting the results that they need on plaquenil or low dose steroids. It is for people that cannot take those or for those of us who have stopped seeing the benefits of the disease.

Peridot20_Gem
05-09-2011, 12:45 PM
I am staying with this med Plaquenil, I have only taken it for a week, but I have no side efforts with it beside Dry mouth. I believe if you have cancer in the family you chance's can increase. No thank you :-)

LizHi Liz,

Stay with the plaquenil if it's suiting you, it just gave me bad side affects as it can with some people and not for other's.

I actually wished i'd not had the side affects because it was brilliant for my skin conditions and it soon cleared them and now i'm back to square one with those but worse but it was for my joint's i really wanted it for.

I wish you the best of luck mate. xxx

Franziska
05-17-2011, 04:27 AM
It's great news that there is a new drug for lupus sufferers. However, unless at least phase IV of the clinical trials have been done I wouldn't want to take it. With lupus your immune system is impaired as it is, so the risk of experiencing side effects is even greater.

@tgal: I know lots of people who take MTX and they swear by it. But you're right, each to their own, it's your body and you must know what's best for you.

steve.b
05-17-2011, 04:29 AM
welcome franziska

Franziska
05-17-2011, 04:32 AM
Stay with the plaquenil if it's suiting you, it just gave me bad side affects as it can with some people and not for other's.

I actually wished i'd not had the side affects because it was brilliant for my skin conditions and it soon cleared them and now i'm back to square one with those but worse but it was for my joint's i really wanted it for.


I've been on Plaquenil since July last year and felt really nauseaus for the first few months and also lost a fair amount of hair but that's all gone now. I dropped a dress size which I was really pleased about. Having been on steroids for long periods I welcomed a medication that had "loss of appetite" as a side effect ;-)

My skin cleared up wonderfully but I still get outbreaks of rashes (arms, joints, feet) when I'm stressed. They usually clear up a few days later and I've finally discovered that the simple E45 itch relief cream works the best for me. And there was I wondering which steroid cream or hydrocortisone to try out next!

Franziska
05-17-2011, 04:33 AM
I've just discovered this website! I'll introduce myself in the "introduce yourself thread"

Peridot20_Gem
05-17-2011, 01:29 PM
Well i phoned my neurologist today and gave her an update on what's going on, as my psychiatrist is well into knowing about Lupus and he said now the Tumour is there expect more to come, he knew i was taking the plaquenil and come off it and then he said you need your immune system surpressing and wants me on Anti-cancer drugs, so i mentioned this to my neuro and she's told me one drug would work great for me and to control and neuro problems besides my seizure's but i can't touch nothing she said till the liver and Tumour have been looked at and sorted incase the drug course any harm in the mentime.
I'm so full of pain and need something now i'm on a waiting game again and the paracetamol ain't doing much for the pain.