I am sitting here in tears at this news. I’m one of the “lucky” ones in that it doesn’t affect any major organs (other than my skin), but it could turn that way any time when the inflammation kicks up. We might be on our way to a cure for this nasty disease!!! I’m… words can’t express how I’m feeling!! This is incredible news. Not only is it the first new drug in 50 years, it’s the first one ever made specifically for lupus! Every other treatment we have is taken from something else – for example the med I take is an anti-malarial, and while it gives me as close to a normal life as I can get at this point, it can seriously affect my liver, and it has the risk of some serious eye damage – I am supposed to have my eyes checked every 6 months to a year while on it, and I take an herb that is proven to restore liver function to try to keep my liver from being damaged.
I am usually very anti taking drugs that have not been on the market long term, because I don’t know the risks involved long term, but if I were offered this medicine right now, I would take it without hesitation, just for the chance at getting everything under control more and not having flares like I do right now!

For those who don’t know, Lupus can be a life threatening illness, in so many different ways. There are other illnesses that can go along with it; one is Sjogren’s Syndrome, that stops your body from producing proper liquids (such as tears and saliva) and dries you up to a dangerous point; another one (antiphospholipid syndrome or APS) causes bloodclots to form and can cause continuous miscarriages – you have to be on some dangerous meds during pregnancy to keep your pregnancy. – both of those can show up in the general public as well, but are more likely with lupus.
I have a less life threatening illness alongside my lupus, called Raynaud’s Phenomenon, that causes my blood vessels to spasm and not move blood properly, it affects my fingers and toes, and I could lose fingers and toes due to it – especially since I can’t afford the medicine I need to keep this from happening.
Lupus itself causes inflammation throughout the whole body – in my case it affects my joints, I also have to be careful about not bumping into things because I get swelling anywhere on my body (my spine is currently inflamed due to hitting it on the table the other day while playing Fable2 while sitting in my computer chair), it’s not unusual for my elbows to swell if I use the arm rests on my chair, just the pressure of resting my elbow there causes large bumps and swelling, my elbows get very hot, very red and very inflamed. I also have my skin affected – I have rashes a lot of the time, and my face can get puffy and painful when I’m in a flare, as well as being bright red.
It also causes photosensitivity, which I have in an extreme. Missing my meds puts me back to this very quickly – I can’t be around the sun or any type of UV light including the lights the government wants everyone to switch to (flourescents) – I end up with severe headaches, all kinds of inflammation in my joints, nausea, insomnia – even with my meds I’m supposed to avoid prolonged exposure to UV because it can still make me ill, just not as severely.
It can cause kidney damage to the point of needing transplants (this is the one that usually is the most deadly as well); four different kinds of inflammation in and around the heart, including the sac of the heart; lung issues; blood clots (even without the illness I mentioned above); neurological damage (I’ll come back to this); and strokes.
The reason I said I’d come back to the neurological damage is because I show a lot of signs of neuro damage, just no money to go to a neurologist and get checked out. My Raynaud’s is actually counted as a type of neurological damage now. I also have the headaches, memory issues, confusion, word dropping (I will be mid sentence and suddenly can’t find the correct word to use to say something, or I’ll say the wrong word and not realize it), fatigue, mood swings, trouble concentrating, ringing in the ears, numbness and tingling in extremities (and my skin can start doing this anywhere), blood pressure issues (luckily mild generally). It can also cause strokes and seizures, luckily I don’t have those at this point, though I have a lot of issues where my limbs will just start twitching out of nowhere.

To learn more please visit