Adult Onset Still's Disease

Very surprised there is no topic for Still's. I was diagnosed with AOSD in 1975. I think I was one of the first people with this disease. It took about 6 weeks before the Dr's settled on Stills. I have been on many,many different medications,have gone through a pregnancy,have been hospitalized about 8 times, have had many complications. I am willing to answer any questions anyone may have since I've been cursed with this disease for over 40 years.

Hello, I was diagnosed with juvenile still's disease when I was 17, back in 04. I guess you could say it was also adult still's as well because I turned 18 and I was still in rough shape. I'll try not to bore you and forgive me for any improper spelling especially on the medicines that I took years ago. I became very ill one night, when I was 17, 105 temp, felt like I was dead. I was losing weight dramatically and was in the hospital. I was tested for every disease they could think of. Hospital doctors realized I needed a specialist and referred me to an endocrinologist. Went to endocrinologist and he did what he knew. At this time my joints were hurting and swelled and he referred me to a rheumatologist. I was 17 in high school and was in a wheelchair at times because my knees/ankles were in horrible pain. I couldnt use crutches because my hand, elbows, shoulders felt like they would crack at any second. Visited the rheumatologist and I was down to about 135 lbs at 6'1. Rheumatologist examined me for 30 seconds and identified me to have arthritis, followed later by being juvenile still's. Dr. Prescribed me plaquenil and prednisone. Plaquenil didn't do beans but the prednisone did help some to get me stable but prednisone is never long term. Few months later my dr. Put me on enbrel. Days after taking enbrel I felt like a new person, went from a wheelchair back to playing sports, etc. Etc.

I'm now 30 and have been on enbrel since 05 when I was 17. I'm now up to 185lbs and am in law enforcement. I have never had a flare up and pray that I do not. I do have damaged joints that will never be the same. Still's really went after my hands and elbows and dont have the range of motion in those like I would like. Winter times hurts my joints a little more but I have a very high pain tolerance and I just grind threw.

I keep a very strict schedule and diet. I usually meal prep and avoid sodas, I run 1-2 miles a day or every other day along with some type of weight lifting. I'm not perfect and like all the things others do. I will limit myself to 1 soda a month (mt. Dew). I don't want you to think I'm bragging, I just know that keeping a schedule and diet really really helps.

I have never met anyone with Still's, I realize I am fortunate. I do 100% believe that with prayer and the medication it got me back on my feet. I then believe with exercise and strong will, that part made me progress even further.

I am strong believer that flare ups can be caused by diet and what you drink. On my lack of will days where I drink or eat unhealthy, I can feel my still's reminding my joints.


Any questions or want to talk let me know.