After 50 years (yes you read that correctly) there could be a new drug to treat lupus. I swear this is the best news I have heard in a very long time! It could be the best news ever! For me as of this moment it is the best news ever. The only way this news could get better is if this new drug is approved and it actually helps with my lupus. I so wish I could be part of the second trials. Lupus is such a difficult thing to live with.
For me, the most difficult aspect of the disease is that it is invisible. I can live with the chronic infections. I can live with the chronic inflammation of joints and tissue. I can live with the crap like having a stroke and needing a hysterectomy due to the disease. I can live with the chronic pain and the chronic fatigue. I can live with the cognitive impairments. I can live with the hair loss. I can live with never knowing one day to the next how I will feel or what system will be attacked next. The hard part is that people look at me and do not see a sick person, as outwardly I look healthy and I do a good job of hiding the war that is raging on inside of my body on a daily basis.
Those with lupus tend to be looked at suspiciously since most of the time they do not look sick. They get treated as if they are hypochondriacs by a lot of people, even those close to them who just cannot understand the difficulties of this disease. They get this treatment even from their own families. I remember after my hysterectomy my family saying hmmm well maybe there is something wrong with her. And then after my stroke a year later there was more hmmmmm I guess she wasn’t faking after all. And even after that and a few other major health crises, most people do not get it. There are maybe (and that is a big maybe) 3 people who do since it has affected them and their families directly. Lupus has also been the cause of a few failed relationships because they find it difficult to deal with health crisis after health crisis and my lack of ability to do a lot of things.
I am currently on a huge cocktail of medications that only work to a point. They give me about 25% relief from symptoms. I currently take 7 different medications. At one point it was 9 however I developed an allergy to one of them and the other treatment was way to painful to go through once a week. The pain of the treatment did not outweigh the benefits of said treatment. So for there to be a new treatment that may actually work for me (With lupus there is no set treatment. Doctors have to play a medication game since lupus affects everyone differently) and maybe just maybe drop my medication count that is beyond awesome! I was starting to lose hope when it came to lupus research since there has been nothing new in so long. This is so welcomed news to me and many other lupus sufferers.
Links to articles:
Google News links
Edit: Here is a great video.
julia sherred
