My Lupus Journey

Systemic Lupus Erythematosus (SLE) is a condition that nearly 1.5 Million Americans live with but very few people actually know about. SLE is a Chronic (long-term) autoimmune disease that causes the body’s immune system to become overactive and attack the body’s normal, healthy tissue. It can cause inflammation, swelling, and fatigue, as well as damage to the joints, skin, kidneys, blood, heart, and lungs. Just like any other chronic condition, there are multiple options as far as methods of treatment. However, unlike most common conditions, there have been very few new treatment options approved for SLE in recent history.

Before we look at my story and what has worked for me over the years, let me give you a little backstory on me. When I was diagnosed in 2012, I had been working as a Registered Nurse for 5 years on an ICU step down unit. I had just finished my Bachelors’ degree in nursing the previous December and was 8 weeks into my Masters in the Nursing Education program. So I was no novice when it came to current education and my own health. That being said, Lupus was not something I was all that familiar with, as it wasn’t something I learned much about in school or had come across often in my career. But I did extensive research and learned everything I possibly could once it was brought up as a possibility.

My Journey Towards a Diagnosis

I was officially diagnosed with Systemic Lupus Erythematosus (SLE) in the summer of 2012 after a full 7 months of being very ill with no firm diagnosis. In February of that year, I came down with what started like my typical case of bronchitis, which I get at least two or three times every single winter. However, this turned out to be very anything but typical for me. I couldn’t seem to shake the symptoms this time, despite me having taken several rounds of antibiotics and steroids. I was then admitted to the hospital for five days. I got IV antibiotics and steroids while they ran just about every possible test, but nothing seemed to work and all the tests came back negative.

By the time I was discharged I had no more of a diagnosis than I did when I went in. I continued to be VERY short of breath with minimal exertion, and the cough was exhausting. As 2012 continued I developed more issues beyond the respiratory issues I started the year with. My feet started swelling and became so painful I could hardly walk, and I was always tired. No, that’s not completely accurate; I was EXHAUSTED constantly no matter how much I slept. I always felt like my brain was foggy and I would often forget my train of thought mid-sentence. My entire body ached. Finally, in the late spring of 2012, my doctor decided to run more blood work. She decided to have a whole autoimmune panel done on a fluke. She never expected them to be positive because they had been negative just a few months prior. Much to both her surprise, and mine, they all came back positive.

In late Summer of 2012, I was finally diagnosed with Systemic Lupus Erythematosus along with a long list of other things which I won’t currently talk about. This was after several months of telling the doctor that there was definitely something going on. When I first saw this Doctor in May, she said I probably had something similar to Lupus, but that it wasn’t Lupus and there wasn’t really anything she could do to treat it. So between May and August, I journaled every single sign and symptom and took pictures of anything that could be seen by the naked eye. I knew my body and after doing extensive research on Lupus I was positive that this is what I had. During that time as I was experiencing a severe flare, I also took the time to look back at my medical history going all the way back to the late 1990s. I did this to see if I could correlate any problems of the problems I had been dealing with at that time to the new symptoms.

As I looked back, it all started to fall into place and make sense. In the late 90s, early 2000s, while I was in high-school I was diagnosed with Mono. Which isn’t that abnormal for a high-school student. What is abnormal is the fact that it lasted for SIX months, at least that is what I was told. Looking back with the knowledge I have now, I feel confident saying that what they called everlasting Mono was actually, in fact, my first of many BIG Lupus flares. For those of you who are unfamiliar with the link between Mono and Lupus, research has shown that a protein made by the Epstein-Barr (Mono) virus binds to areas of the human genome linked to an increased risk of certain autoimmune diseases. Lupus is one of those autoimmune diseases.

Undergoing Treatment

Finally, after documenting everything and showing the doctor all the information that I had gathered over the last several months, I was diagnosed with SLE. At first, I was started on Plaquenil only. Plaquenil is the OLDEST, tried and true, Lupus treatment available. It was approved by the FDA for treatment of Lupus in 1955. It is supposed to relieve some lupus symptoms such as fatigue, rashes, joint pain, and mouth sores. I have remained on this medication since I was diagnosed. But, if I am being totally honest, I really don’t know that it does much for me. however much like most of my other Lupie (a person with Lupus) friends, I continue to take it just in case.

After a few months of taking Plaquenil alone and no improvement of my symptoms, I was started on Imuran. Imuran is an immunosuppressant which alters the activity of the body’s immune system so that it will no longer attack the body. This medication is traditionally used as an anti-rejection medication for individuals who have had organ transplants. With Imuran comes the possibility of developing issues with your blood, such as decreases in your red and white blood cells. This means people on it require frequent lab draws. I was on Imuran for about 8 months and had no improvement of my symptoms. I continued to be exhausted all the time and hurt all over the place, while my labs were not improving.

My Experience Taking Prednisone

While we were trying to find the correct medication, I was taking Prednisone. It was a corticosteroid to help keep me stable until we found a treatment that would work, and that I could stay on long term. Prednisone is not something that anyone should be on long term if they can help it. In many chronic illness communities, prednisone is referred to as the devils’ tic-tacs. Prednisone is a fabulous drug in the sense that it can make you feel better and treat many issues quickly. But it also has a whole host of negative side effects too. It can cause weight gain, insomnia, hot flashes, and insatiable hunger just to name a few. Sadly, prednisone is one of the most effective medications for decreasing swelling, warmth, tenderness, pain and inflammation caused by Lupus.

For me, however, it did more harm than good. I was on such a high dose of prednisone for such a long time that it impacted my adrenal glands. Our adrenal glands make a steroid called cortisol that we need to help control our blood pressure and heart rate, among other vital body functions. In my case, the high doses of synthetic cortisone, aka prednisone, caused my adrenal glands to no longer produce cortisol. This threw me into adrenal insufficiency and caused me major issues. On a daily basis, it would be nothing for my blood pressure to stay under 90/50 and drop under 70/30 when I would stand up. This would cause me to be extremely nauseated, to the point where I would vomit and sometimes pass out. In order to treat this, I had to take supplemental cortisone to get my body to learn to make it again.

It’s taken three years, but my adrenal glands have started to work again. I can now no longer take prednisone for any length of time without risking major issues. Even though my adrenal glands are working better now, any time I get sick, have any big flare or have any kind of procedure/surgery I have to take extra cortisone as a stress dose. Otherwise, I risk having major issues as I have mentioned above.

My Experience Taking Methotrexate (Mtx)

After taking Imuran for a number of months with no improvement, my Doctor decided to try me on Methotrexate (Mtx). Methotrexate is a chemotherapy agent that acts as an immunosuppressant and is in a category called Disease-modifying antirheumatic drugs (DMARDs). Mtx is actually the Gold Standard for treating Rheumatoid Arthritis (RA) and was approved by the FDA for treatment of RA and Lupus in the late 1980s. Mtx is used in Lupus to treat the pain and swelling of the arthritis that can accompany lupus.

DMARDs not only reduce this pain and swelling, but they may also be able to decrease long term damage to your joints. I took this for a while as a pill, which seemed to be the first medication that I had tried that actually seemed to help. The only drawback for me was the nausea. It was INTENSE. But we were able to change to the injectable form and the nausea decreased dramatically. The Mtx and the Plaquenil worked well for a while. Until they didn’t.

My Experience Taking Benlysta, My Saving Grace!

A little shy of two years after my diagnosis, in the spring of 2014, I felt like the Plaquenil and Mtx were no longer working. My labs were okay, but I still felt awful ALL the time. I might have had a handful of good days a month, but that was it. Finally, I told my Rheumatologist that something had to change. I told her that I couldn’t keep going the way I was. That is when she first mentioned Benlysta. Benlysta was still relatively new at this point, as it had only been approved for use by the FDA for about three years (Approved in 2011). Benlysta was the first new medicine to be approved for the treatment of adults with SLE who are receiving other treatment in FIFTY YEARS!!! It was a totally new way of thinking for the treatment of Lupus.

Benlysta is a Monoclonal Antibody, a biological medication, which works by calming down the hyperactive immune system of lupus by inhibiting a protein called ‘B lymphocyte stimulator (BLyS)’ which is believed to increase inflammatory reactions that attack and damage the body’s own healthy tissues. Basically, in layman’s terms, the medication knocks out the immune system so it can no longer attack all the things it shouldn’t be attacking, like the joints, the heart, and the brain. When it was first approved by the FDA in 2011 it was only available for adults, and only available to be given intravenously. Since then that has changed. In 2018 the FDA approved it to be given in an Injectable form. And just last month (April 2019) it was approved for the treatment of Lupus in everyone over the age of five.

Benlysta has been my saving grace and a doubled edged sword all in one. It has given me my life back. When I am on track and able to get it every 28 days like prescribed I feel my best. It gives me 2 ½- 3 good weeks a month (sometimes a little more, sometimes a little less). Whereas when I was on previous medications, I would only have a handful of good days a month. ‘Why is it a double-edged sword’ you may be asking? Well, that’s simple! It gives me my life back but also makes me so much more susceptible to infection. Since it knocks out my immune system so it will stop attacking my body, it also knocks out the immune system that would fight off infection. So, during the winter I am essentially home-bound because I pick up every little bug that comes my way.  

Everyone Is Different

Each person’s experience with Lupus is going to be different and everyone will respond to medications differently. Some people may never need Benlysta, and others may need the bigger guns like Cytoxan, which I didn’t mention because I have not had needed to try that. Sadly, no doctor can just look at a person’s labs or their physical exam and know what medication or medications will work for them.  It’s honestly trial and error for most people. For right now the trio of Benlysta, Methotrexate, and Plaquenil are what is working for me. But that could change tomorrow.

Lupus is ever changing, as is the treatment. There are currently several drugs for lupus in the trial phases, so we can only hope that they will make it through the process and be available for us in the future. My advice to anyone newly diagnosed or anyone who just isn’t doing well on their current regimen is to do your research. The best thing you can do for yourself is to research and be your own advocate. Find out what’s out there and what’s available and talk to your doctor about what you think might be best for you. Because, in the long run you are the only person who knows what is best for you and your health.

Amber writes at She is a Registered Nurse by but due to her illness she is no longer able to work outside the home. Although her years of medical background give her a different point of view on many topics. Her goal in life has become raising awareness for the issues those with chronic conditions face, as well as for the conditions themselves. She also wants to make sure that those suffering from a chronic illness know that they are not alone in their fight.