Diagnosing Lupus

There wasn’t a defining moment or even chapter in my life pointing to when Lupus invaded my body.  The pain began at age six. I quickly learned how to fake well. Overall ignoring the pain. It was mentioned off and on through the years to my pediatrician. No one was persistent with any of my symptoms or complaints. My first severe flare up was at nine years old. I had back to back ‘viruses’ blamed for every intense symptom. I was put on homebound, unable to go to school. The older I got the sicker I got. The more intense the pain. The more symptoms appeared.

I longed for a diagnosis. For someone to take me seriously. I was told countless times I was too young to be in so much pain, too young for a chronic illness. The first rheumatologist I saw did no testing, yet placed me on a medication. At first, I was relieved and full of hope. That is until I began having an allergic reaction. The doctor insisted on increasing the medication. I began having psycho seizures and stopped taking the medication. I saw a few other rheumatologists. Everyone eagerly promises to get to the bottom of my case at the first appointment then quickly becomes discouraged telling me they are clueless or there is nothing wrong with me.

One day I was discussing my frustrations with my cousin. She asked me if I had been tested for Lupus. I had no clue what Lupus was, but I had not been tested for it. She advised I check out the Lupus Foundation of America. Which of course, I did that evening and I was in awe. This illness was a perfect fit. It described every wacky symptom I had. From that point forward I did research on Lupus and spoke with the foundation several times learning as much as possible.

My symptoms mirror a perfect textbook case. In the beginning of my case, I believe due to my age, my labs were not always positive. I have had some of the top doctors on my case all of who believe firmly I have Lupus, but the way my body functions is different from most people. I am not normal by any standards.  After a long battle, I got my diagnosis. As soon as I received it I asked for it in writing. I switched doctors due to going away to school then switched again due to getting to sick and coming home. I had a doctor take me off all my medication including Plaquenil. The doctor told me I just had Fibromyalgia. He sent me to a Fibro doctor claiming she was the best in the field and she would agree with him. Well, that backfired for him. She told me I was a Lupus patient and needed a better doctor. She quickly got me into the team of doctors I am with now.

I switched doctors due to going away to school then switched again due to getting to sick and coming home. I had a doctor take me off all my medication including Plaquenil. The doctor told me I just had Fibromyalgia. He sent me to a Fibro doctor claiming she was the best in the field and she would agree with him. Well, that backfired for him. She told me I was a Lupus patient and needed a better doctor. She quickly got me into the team of doctors I am with now. Though, we frequently become frustrated still with my case and have different options I love my team of doctors. Having good doctors is a true treasure. Knowing that they will listen, are trustworthy, and will try to help makes things slightly less stressful.

I came home a few weeks early from college my first semester with the plan of getting things under control and then going away again the following semester. I found out I had severe double pyelonephritis (kidney infection). It lasted a little over four months. My body has not been the same since the infection.

I thought knowing the name to the monster reeking havoc in my body would be my big break though, the end of my major struggles. I thought I would get my life back.

It is also a battle keeping a diagnosis. Medication makes labs look pretty than the doctor begins to overthink.It seems when blood tests are postive they are never positive enough. When additional test records something alarming it is brushed off to the side. It feels like a game. One I don’t want to play. My symptoms equal the classic Lupus textbook case, but my labs do not always reflect this.

Diagnosing any autoimmune disorder is a complex task. Even in the medical field, people are not educated enough about autoimmune diseases- especially when it comes to Lupus. This is one reason awareness months are vital. Not only do those who suffer with the illness get support and educated, but doctors have new chances to become educated as well as people not directly affected by this particular illness.

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Benlysta

If you are a Lupie, there is a good chance that you have heard of Benlysta. For those of you who have not heard of Benlysta, I will give you a brief overview. Benlysta has been the only medication specifically developed for Lupus. It took underwent years of clinical trials and endless hours of research. It is intended to be used along with other Lupus medications. Benlysta is a biologic which is given in an Intravenous infusion once a month. There are still some trials being run on it. If you are interested in learning about how Benlysta beneficial in the treatment of Lupus I strongly encourage you to check out there webpage: http://www.benlysta.com/. Personally I have found the videos on the webpage educational as well as the information kit I received in the mail.

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It is essential for me to educate myself about medications prior to beginning them. I began researching about Benlysta a year before I began my first infusion. I read as much as I could about it, watched various videos, and spoke to others on Benlysta. I discussed the things I learned with my parents. I had my heart set on trying Benlysta. When my doctor mentioned beginning me on the medication, I began the paper work without hesitation. Once I got insurance approval I enthusiastically began my loading dose infusions. I got Benlysta every two weeks for three loading doses then went down to once a month.

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Many people recommend eating protein the night before and the morning of the infusion. I get sick if I eat large amounts of protein, therefore I eat about half the amount of protein that other people consume. It is vital to remain hydrated before, during, and after the infusion.

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Before I get my Benlysta I usually get blood work done. Then I get IV fluids and premedicated. Premedication varies from person to person. I take two Tylenol orally and get Benadryl and Zofran in my IV. The infusion it’s self is uneventful though personally I endure a lot of pain during it. (Most people do not experience this much pain. My body likes to be different)

Benlysta takes time to work. Waiting is difficult when you have endure so much pain for a long period of time. Everyone notices improvements at different times. However it is said that one does not get the full benefits until a year after beginning the treatment. I have been on Benlysta for six months now. I am going to briefly share my experience, however I urge you to keep in mind that my health is not stabilized and there are several factors as to why I have not had more benefits from this treatment. I noticed a difference from the start in pain levels. However it was short lived. I only received relief for 5-8 days.Within a few infusions my hair loss drastically got less. After my infusions I was extremely itchy until my last one. The itchiness did get better with time. I have my infusion around the time I eat lunch but I cannot eat during my infusion. Sometime my appetite decreases a bit before my infusion. I usually have trouble sleeping the night after my infusion. Everyday before my infusion becomes more difficult and more painful. My body seems to crave the treatment so much. It feels like it completely abandon my system too quick.

Though I was hoping for a drastic improvement, I am grateful everyday that I receive Benlysta. I hope as time goes on I will improve greatly.

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Please share your experiences with Benlysta in the comments. Feel free to ask questions as well.