Side effects of medications can be worse than the symptoms
I originally went to my doctor because I was feeling run down and had some joint pain. After a bunch of tests, my doctor told me I had lupus and put me on ten different medicines.
The side effects gave me more pain than the original symptoms! I have lost my hair, gained weight, and now severe headaches. Still, my lupus and my life would be much worse without the drugs.
Janneke, the Netherlands
Because of lupus, I live a life that is unpredictable. Tomorrow I can fall ill and stand still for several weeks. This already happened to me several times. The last two times my kidneys were affected and I must take strong medicines to control my lupus. The side effects of the medicines are very serious.
In good times, staying out of the sun is hard to do. Every year I’ll do it anyway and get punished with a nasty rash. And the always returning extreme fatigue and joint and muscular pains are very frustrating.
My hope is that one day there will be found a good medicine to treat lupus, without any side effects!
LaShanda, United States - North Carolina
After coming down with what I thought to be a stomach virus at the age of 23, I lost my appetite, always found myself nauseous, and began to lose weight. When a rash appeared on my face, I went to the physician, who thought I was stressed out from being unemployed. About two weeks later, I was diagnosed with SLE. While the biopsy was painful, the medications prescribed to me have to be the largest obstacle for a lupus patient.
For the first couple of years, the steroids put about forty pounds on my five feet one inch frame. I had to undergo lupus treatments of Cytoxan up until last year when I had a terrible outbreak. The treatments made me nauseous and damaged my hair. Christmas 2005, I had pneumonia and sinusitis, which I was unaware of. I ended up in the ICU for two days sedated because of all of the side effects of the sinus medications. I was unaware that certain medications could speed up my heart and cause me to have seizures. For a person who has never experienced seizures, this was hard to deal with. Since that terrible incident I have been seizure free, paying more attention and making sure to take my medication, and I have also decreased my steroid intake which allowed me to shed about thirty pounds. This condition has its ups and downs. I have been doing pretty well for the past year, and I pray that I can keep this under control. At the age of 28, learning to slow my life down has been hard to deal with. I work full time and I am also completing my degree full time. At times, I feel that Lupus is my body’s way of saying "slow down."
Judy, United States - New York
As I was about to enter a new, exciting phase in my life as a wide-eyed 17 year old ready to conquer the world, my world as I knew it came crashing down around me before I could say Systemic Lupus Erythematosus. I HATED the word, the way it sounded and everything it came to represent. It meant the sun was my enemy. It meant all-nighters could land me in the ER. It meant joint pains & rashes were new vocabulary words, not something most teens had to experience. But THAT was my new reality.
Fast forward to 2007, nearly 30 years after receiving that life-changing diagnosis, I can happily report that I'm still standing! I’ve suffered countless flares along the way, which included the need for chemotherapy treatments, hip replacement surgeries (6)... just to name a few. I’ve lost hair and regrown it. I’ve gained weight and fought to lose it. It’s a constant struggle, this life as I now know it, living with lupus. It has become part of me. The 13+ daily medications, the occasional weird rash, the pain & the overwhelming fatigue ... all very much a part of me. I have managed to "make friends" with this disease and find all the reasons why it has even come to represent how I can strive to be a better person in SPITE of it. It has made me stronger & wiser. It has awarded me friendships I might otherwise not have found. It has opened my eyes to the awareness of struggle which every human deals with on some level. We can either retreat or we can fight & conquer. I choose the latter. And I’m STILL STANDING ... & doing so with a smile, most days.