Daily Journal
Keeping track of my disease, finding out what works, what doesn’t, tracking my medication episodes and other medical issues has been beneficial for me. This blog has also helped others. I am grateful that I starting writing these posts many years ago when I kept trying to find answers. In 2008, there was far less information on the web for Adult Onset Stills Disease and trying to find any information was very hard. I decided that I would document my progress and provide information of what I have gone through to provide a place where others can ask me about my journey. Of course, different people will have different courses of medical experiences, but if I can provide a gentle ear to listen and a calming place to let anybody suffering know that I care, then I have peace in my heart.
Writing this journal has helped me find patterns of what causes me to flare and what helps me regain my strength and health. This is my personal diary of my journey with this rare disease listed on the National Database of Rare Disorders. I hope this blog helps others to understand this rare disease. Please feel free to review my archives to read my about my journey.
Adult Onset Stills Disease 
Thank you for your website. Still’s Disease hit me like a ton of bricks in the fall of 2013. It came on after the trauma of breaking my ankle in the summer. I am kind of dumb when it comes to taking care of myself, so I limped around on that broken ankle (thinking it was a sprain) and by September the Still’s came on.
My case was not as severe as yours, nor did it come on so quickly, but by December I had all the major symptoms but the rash. I only had to go through two doctors before (in January of 2014) I went back to my former PCP who finally took it seriously. Within a couple of months, I was under the care of Dr. Karla Miller at the University of Utah and she has been AMAZING.
One of the challenges with Still’s is that it can mask other conditions. Like I said, I had broken my ankle and limped around on it for a couple of years while getting the Still’s under control. Finally (duh!), I realized that the treatment had abated all the joint issues except for that pesky ankle and the podiatrist found that I was walking on an ankle with torn ligaments. I also didn’t recognize that acute gall bladder disease I had because the pain and vomiting were so similar to the Still’s. I was finally driven to the emergency room and emergency surgery. Thank you for sharing, I am taking it all to heart. BTW, I see that you take Methotrexate (as I do), I also use Humira. Have you had any experience with Humira?
I am in awe of your ability to limp around with broken bones! You and I are similar in this way! I am grateful that you finally received the cate you needed for your ankle. If you read through my last posts, I too was misdiagnosed with broken bones and suffered for 5 months with 3 broken foot bones before they were acknowledged. UGH!!
And then went into a terrible flare from so many months of pain and sleepless nights in extreme pain and suffering.
It is true, I feel that tremendous emotional and physical trauma can bring a flare. In my soul, I feel this is true. I am so glad that you were finally diagnosed and, treated for, unfortunately, AOSD. It is such a difficult disease to diagnose.
I have done well with MTX (methotrexate). And I have not needed to advance to other medications.
I hope your flare is under control and you are feeling better. Please keep me posted.
Stay healthy my friend.
Claudine
Thank you so much. You know the mumber of people catching this disease is extremely rare, so they do not know much about it. We had to pass hospital to hospital( 4 hospitals) and finally Doctor Khoa in Cho Ray hospital in HO CHI MINH city diagnosed it . She was taken so much Steroids and now she is going to recover. Her face seems containing water. It looks fatter than usual and she tries to walk as normal as possible. Yesterday we organized a birthday party for my son, she ate much meat and a lot of sugar and as a result of this the rashes appeared. we were so worried. We really need your help because we have little information about this disease as well as how to live well with it. Once more time let me send you and your family,my whole- hearted thanks and wishing you and your family good health and good kuck
My heart goes out to you and your wife. I have had stills since I was 7years old but wasn’t diagnosed until I was 34. I was in the hosp and in a skilled nursing home in 1991 as all of my joints were completely frizen at that time. My fevers come and go as does the rash and I am always tired. I work full time as a nurse. I am blessed with a great support system. If I can be of assistance let me know. I have been researching stills since 1991 though the information is quite limited. Hang in there and be I. Touch!
Hi! I read where you are a full time nurse.. I am too and was just diagnosed yesterday. Any time I am working, by the end of the shift I am completely broken out and the joint pain is extreme. Does working long shifts seem to make it worse for you?
I am still learning about this disease.
Thanks!
I am so sorry you received this news of having this illness. I am hoping that you have the type of stills that has one flare and then never again. Unfortunately, I have the type that has flares that come and go. As you read through my blog, you may have noticed i had flares for a few years then was in remission for several years. I am grateful I do not have the type of stills that is chronic flare. I had to eventually give up my beloved career work 2 years ago as an occupational therapist for many hospitals., ( I was a nurse for 5 years prior to being an OTR)
It was getting very risky for me and the long days (although I cherished and loved every single minute) was too dangerous for me. I still cry if I think about it. I am hoping to do teletherapy). However when I was diagnosed in 2008, I was able to work for 10 years but I had to watch my fatigue level as it would often send me into a flare . This was not fair to my team mates. I am truly wishing you a return to stable health and flare free. Please keep me posted .
Yes Paula I would like to know more
THANKS FOR YOUR JOURNAL. MY WIFE HAS GOT STILL DISEASE AND HAS JUST GOT BACK HOME AFTER 45 DAYS IN HOSPITAL. NOW SHE IS STILL WEAK AND WE DON’T KNOW MUCH ABOUT THE DIET, PLEASE HELP ME. WE ARE IN VIET NAM
Hello Duong, I am glad that my journal can bring some comfort for your wife. I am so sorry that she has suffered so long. It sounds like her hospital stay was very long. I hope that she was finally diagnosed. Has she started on medication? Steroids? I hope that she has a trusted Rheumatologist that can give her the medications that she needs. I have been asked through the years to elaborate on the diet that has helped me tremendously. I will be adding a section to my blog, titled: Anti-Inflammatory Diet. I can only say that it has helped me live a normal life again, along with a very lose dose of Methotrexate. I have an App on my Iphone that I use daily that has helped me. It is called IF Tracker. I do not know who made the app, but it sure has helped me. I don’t know if the app is made for other phones. The app rates every food in a positive or negative and then appropriate food choices can be made.I will provide details about my food intake on the new section I am making today.