I thought it might be a nice addition to the blog to start collecting some of the onset and road to diagnosis stories from people so that others can read and possibly gain some great information from them.

I encourage you all, if you feel comfortable enough, to share your stories with me so that others can benefit from reading them. Feel free to email them to me at kirsten@notstandingstillsdisease.com.

Melly

Melly’s diagnosis of AOSD came at age 19 and, as of 2012, at age 54 she was in remission. Unfortunately, she passed away in the late 20-teens. The rest of her story will be in her words.

I was born in 1958 and was very healthy as a child except for over-active lymph glands in my neck when very young and I developed an allergy to the sun around age 10.

In 1977, I had sudden symptoms of pneumonia one day but without clear evidence, I was told. A bit later, I had an inflammation episode at an old injury site in my foot that was diagnosed as bursitis. Into the next year, I started having symptoms of the flu with swollen glands, muscle pain, and painful joints. All of this came and went as the months went on into summer. When my knees swelled the size of softballs and I could not lift my head from the pillow without assistance I went to a general doctor and was told to go home and stay in bed until I was better. I was having high fevers a couple of times a day spiking to 105 degrees and averaging 102/103 degrees. They always happened at the same time in the afternoon and at night. I also started getting a rash on my back that was itching when hot. The doctor finally referred me to an internist.

I had lost a total of 28 pounds in just 6 months and had an enlarged spleen. The internist said it could be several things but I was very ill and needed to be admitted to the hospital that day. By the third week in the hospital, none of the tests had come up with a diagnosis for my illness. I was severely anemic and it was discussed I may need transfusions. I weighed 107 pounds at the time and I am 5’11” tall. I couldn’t walk but had a therapist come in daily to keep my joints mobile. A rheumatologist was called in and I was told my diagnosis was Adult Onset Juvenile Rheumatoid Arthritis. I remember he was so kind to reassure me they were not labeling me a juvenile. A few years later I saw it listed as Still’s Disease on my charts. I still have the same rheumatologist today and will always feel that he and the doctors I had saved my life.

Over the years, I met only two people that knew what Still’s was. In 2001, I got my first computer and the first thing I searched was Still’s Disease. It came up with the Yahoo support group that is sponsored by the International Still’s Disease Foundation. I sat and cried because of all the years of my loneliness. Then here was a group of others that had what I did and would understand my life.

Still’s brought with it not only illness but loneliness. A silent loneliness of pain and years of summoning inner strength to carry on living. Mostly I didn’t think I would be a good enough mother with this life of sickness. My daughter was 2, and I was a single mother, when diagnosed. There were many times of silent depression. Somehow I was able to reach out and tell those closest how I felt and I got help to carry on. There were better days to come. They didn’t come quickly or easily but they did and I will never forget that. I started seeing a therapist for bio-feedback pain management and then continued through the years for sessions to help with the adjustment of living life with disabilities.

Part of my doctors’ care was making sure I got physical therapy, occupational therapy, and anything else to keep the arthritis from crippling me. I had several doctors for the related conditions that occur with Still’s and they always worked together sharing information. My doctors also stressed the importance of rest and quiet with this disease and I learned how much it meant as time passed. I learned quickly different things made me worse or helped. When I got upset emotionally, my fever would spike. If I overdid too much, I would have increased inflammation in my joints and have to slow down. But if I didn’t move or do isometric exercises, my joints often froze and I wasn’t able to move them at all. Sometimes I couldn’t even feed myself. If I made plans for vacations or activities, I had to plan ahead or tell others I might not be able to keep them. These are just a few of the things I learned as I was able to function again.

The first few years I was the sickest. There were medications to be tried for months at a time and failed. By the second or third year, I was slowly able to get off the prednisone as a new drug at that time was introduced. It worked and slowly my disease started taking a course of remission and continued as the years passed.

When I felt better physically with less fevers and joint swelling, I started doing things I had [done] before I was sick. I went back to playing hard-impact sports and dancing. It didn’t take long before my hips were deteriorated. I had no idea this could happen. I spent the next 4 years continuing physical therapy. I needed to use a cane and platform crutches to walk. The last two years I waited for UCLA medical center to get approval to start using newly developed hip implants. I was 26 at the time. Since then I have also had my right knee replaced. I share this because I never knew how aggressive the arthritis could be after/while being on steroids and having joints drained with injections. The medical term is AVN.

I am fortunate to have been in remission for years now. I have symptoms from the arthritis but the systemic activity of Still’s is dormant. Life has been one of the adjustments; sometimes hourly, usually daily and definitely yearly, but that isn’t much different than anyone else’s. When I look forward, it is with hope that others won’t ever know the feelings of loneliness I knew and hopes that, with time and research, these stories will become a thing of the past.

My heart holds strength for all those that live with Still’s to keep fighting!

Erin Atlas

I was a second-year law student when my first symptoms started. It started with what I now know is a typical AOSD rash – pink and raised with large bumps, not itchy, but occasionally painful. It started out in small patches, but eventually, it started spreading over more and more of my body and showing up most days out of the week. I had some mild joint soreness too, but I had never had that kind of pain, so I didn’t really know what it meant. I went to my university’s health center, and they insisted I must have some kind of allergy. They subsequently sent me to a dermatologist at the university hospital, who assured me it was just hives and nothing else. So I went to an allergist and was prescribed an antihistamine, but nothing worked.

By my third year of law school, I had progressively worse rashes and joint pain, and I was exhausted all the time. I had difficulty getting up for class in the morning and I often took two naps a day. I knew something was wrong, so I went back to the medical center, but they insisted I shouldn’t be worried — it was probably just my allergies. My mother has lupus, and I was becoming concerned that I was also developing it, so I made an appointment with a rheumatologist. He ran some blood work. Nothing was abnormal, so he felt there was no reason for me to continue seeing him.

Fast forward to my first year of working post-graduation, and I still had the rash and the joint pain was becoming unbearable. My knees and elbows were so sore that I couldn’t sit at my desk for more than 20 minutes at a time, and I would limp around the office. My primary care doctor ran blood tests and they came back normal, and he said I should just keep an eye on it. So I did the best I could with ibuprofen and just continued to grin and bear it. The stress of it all took a serious toll on me, and I was frustrated, stressed, and often a rather unpleasant person to be around.

My second year of working (and 3+ years after I began to show symptoms), things got even worse. I woke up one night with the most incredible pain in my right toe. I could barely walk and ibuprofen did nothing to make it better. I went to the ER, where the doctor said I had gout, and off I went with medication for it, which worked temporarily. I had multiple bouts with severe chest pain which felt like heartburn so crushing that I could barely breathe. Again, trips to the doctor and multiple EKGs showed nothing. My right wrist became incredibly painful, to the point where I could not even pick up an empty glass or drive my stick shift car. My primary care doctor diagnosed me with a severe case of carpal tunnel and sent me to a hand surgeon for evaluation. The surgeon was surprised that I hadn’t realized I only had about 15% of my range of motion left in my wrist. I think the overwhelming nature of my symptoms had started to dull my perspective on the pain. I was very lucky to have seen him, because after hearing my story and looking at the x-ray, he called the rheumatologist I previously saw and demanded that he see me right away. Thinking I might finally get some resolution to all my problems, I saw the doctor. He was concerned about my joints, ordered some blood work, and scheduled a follow up. He thought I might have rheumatoid arthritis, but although my SED rate was high, I didn’t exhibit sufficient other symptoms. However, he asked me to come back and see his nurse practitioner. Of course, he promised he would pop in and follow up, but I never heard from him again. Instead, I was relegated to the well meaning, but ultimately not very effective NP to determine my course of care. She decided I should try Enbrel as my first drug treatment and sent me on my way.

At this point, I could barely walk or function on a daily basis. The Enbrel did nothing, and suddenly, I started developing a chronic fever. Over about a month the fever went from 99 to 100, then jumped up to 103. I stopped taking the Enbrel on the nurse practitioner’s orders, but my fever was not subsiding. I called the NP, but she told me I should see my primary care doctor because it sounded like I “had the flu.”  I had a 103-degree fever which presented as severe chills (in which I would wear five layers, gloves and a winter hat indoors, but could never warm up), followed by drenching full-body sweats when the fever finally peaked and then broke. Through it all, I stupidly insisted on showing up to work every day and often just closed my door and laid my head on my desk trying to convince myself that I could handle it. Finally, after a weekend in which I slept 18 hours a day and was suffering 6 or 7 fever cycles daily, my husband insisted I see my doctor. My primary care doctor ordered me to the hospital immediately.

I spent four days in the hospital while they pumped me with IV fluids to try to get my fevers under control and ran every test imaginable. My spleen was swollen, my liver was inflamed (and my AST levels were elevated), but they couldn’t pinpoint anything wrong with me. Once my fevers subsided to acceptable levels, I was sent home.

Luckily, while I was in the hospital, my doctor arranged for an infectious disease doctor to oversee my care. It was this brilliant man who finally diagnosed me a couple weeks later with AOSD. He was unhappy with my previous care from my old rheumatologist, and I was referred to a new one.

My new rheumatologist is everything my old one wasn’t. She listens well, she’s methodical, and she doesn’t dump me with a nurse practitioner and fails to follow up. She initially put me on prednisone, which helped, but didn’t eliminate the fevers or the joint pain. After about six weeks, I started on methotrexate, which eliminated the fevers but not the joint pain. I started having an elbow that would lock up at almost a 45-degree angle and require steroid injections. I could still barely walk upstairs or very far at all. She decided to put me on daily Anakinra (Kineret) injections in addition to the methotrexate, and almost immediately, my joint pain was relieved.

It took three years, four days in the hospital, and seven weeks of bed rest to diagnose me with AOSD and get me on medicine that allows me some semblance of a normal life. That was two years ago. Although I still struggle with exhaustion, the occasional fever, and some joint pain and swelling, I feel very lucky to be at about 85% of what I once was. Through it all, I’m reminded of how lucky I am to have a wonderful then-fiance, now husband who supported me through it all, as well as a great family and a supportive workplace.

I still have days where I get down about my disease and struggle with the anxiety of not knowing when or if it will get worse or if I will ever fully feel like I used to. I wonder if I will ever be healthy enough to go off methotrexate so that I can have children of my own. My husband occasionally has to threaten to hide the thermometer because I get paranoid about having fevers. But I refuse to let AOSD get in the way of my goals: to make partner at my law firm, to have children someday (even if that means adoption!), and to climb to the summit of Mt. Kilimanjaro in Africa.

Attitude is everything when it comes to AOSD, and I won’t let it get in the way of my dreams.