My Still's History
(Click here to see my Pictures)
My name is Jennifer, I’m 30 years old, and I was diagnosed with Adult-Onset Still’s Disease in September of 1990. I was 19 at the time and I had been sick for a year, but the doctors were having trouble pinning down exactly what I had, due to my sporadic symptoms and lab results.
My first symptom was a rash on my upper arms and chest. It was right after Christmas in 1988 and I was a senior in high school. I thought I was allergic to my new body wash, but the rash stayed even after I stopped using it. Over the next several months, the rash would appear in the afternoons but would usually be gone the next morning, only to reappear again in the afternoon. It was a salmon-pink color, raised red splotches across my arms; it soon spread to my hips and thighs. If I got angry the rash would get redder and redder. During that time I went through every thing I could think of that I might be allergic too. Nothing seemed to affect the rash, almost like it had a mind of it’s own.
As the summer came I began to be really tired all the time. I didn't have much energy to do anything. I figured it was because I was under stress, as I was preparing for college that fall. By August my rash had completely disappeared. That September I began my first semester at college, but during the 3rd week I was feeling terrible. I thought I had caught a bad cold, almost like the flu. I had a terrible sore throat, a cough that wouldn’t go away, and I was so exhausted. Then my ankles began to swell, practically overnight. They were huge, then my hands swelled, then my knees, and I was in so much pain, this all happened in 2 days. I went to the doctor, they were thinking maybe I had a type of infectious arthritis and gave me a shot of steroids and some antibiotics. They told me it should relieve the joint pain and swelling. It helped some, but 2 days later I was back down there and I could hardly move. I couldn’t get any shoes on. This time the doc (who was filling in for my GP) ordered some bloodwork and gave me a prescription for Motrin 800mg. I didn’t get any better; in fact I was quickly getting worse.
When my GP came back he looked over my tests. Everything was out of whack. WBC was high, RBC was low, I was anemic, but mostly I had a sed-rate of 130. He told my mom to bring me in. He did some more bloodwork. Another CBC, sed-rate and CRP was ordered along with an arthritis panel. Everything on the arthritis panel came back negative. The only test that was odd was my ferritin level was very high. It was 28,ooo. The normal is from 45-145. It's now known that an elevated ferritin level can be an indicator of Still's Disease, but this wasn't known back then, plus it was just a General Practioner doing the labwork, not a specialist. Anyway, He diagnosed me with sero-negative RA, for the time being. He referred me to a Rheumatologist. A week later I had my appt. The RD did more bloodwork, gave me more NSAIDS and another steroid shot. At that time Still’s disease was mentioned, but I did not have a lot of the symptoms. My fevers were only around 99-100’ F. And my rash had not returned, and even though I told him I had a rash for 8 months prior to this, he dismissed it. I had also lost quite a bit of weight, a total of 30 lbs. in a few months. Although I needed to lose 25 anyway, so I didn’t complain too much about that problem.
By now it was the middle of October, I was still trying to stay in school, but it became impossible so I had to withdraw. I could not walk, I could not use my hands, and it was really a difficult time. My hands became so stiff, they just curled in and there was no way to hold a glass with them. I needed help to eat, go to the bathroom etc. Then the last week of October I started having a high fever, every evening my fever would rise to around 103, usually around 9-10pm, the RD gave me some tylenol suppositories to help bring the fever down, which it would, but then it would go back up to 103 the very next night. On Oct 31, I saw the RD again, he put me on 40mg of prednisone, and it was like a miracle drug!!!! I was walking up and down stairs just a few days later.... . But it didn’t last. Once I started the prednisone, the fevers immediatly went away and we didnt think about the fevers again until a year later.
My RD said I had a very aggressive case of some type of inflammatory arthritis and that we needed to add some medications to hopefully slow down the joint destruction. At that time, the 3 main ones were Plaquenil, Gold, and Methotrexate. And they were tried in that order. I took the Plaquenil for 6 months, there was a little improvement but the disease was still fairly aggressive, my sed rate was around 90, so we tried the Gold. It was spring by now, and I still had lab results that were off the wall. The doc couldn’t pindown exactly what I had. He wanted to do a bone marrow aspiration to test the marrow, to rule out any type of lymphoma’s or a blood disorder. That was a very painful test, not one that I care to ever have done again. The bone marrow didn’t tell them one thing, except for all the things that I didn’t have. I had been taking the Gold by now and I did about the same as I had with Plaquenil, but I was having a lot of red blood cells show up in my urinalysis so the RD felt that I was having a reaction to either the gold or my NSAIDS. He decided to stop both and see how I do. That left me only taking 15mg of prednisone.
By now it was already the fall of 1990, an entire year after I first had symptoms. Just 3 days after he stopped my Gold and NSAIDS I began feeling horrible. My joints were not too bad, but I was running a fever, my glands seemed to be swelling. It was a Sunday afternoon; my temp was around 103, so I went to the ER. They admitted me to the hospital where I didn’t get any better, After 4 days I had gotten progressively worse, there were problems with my spleen, and the high fevers, with no known cause. I was transferred to a larger hospital 30 miles away and under the care of a new Rhuematologist and Infectious Disease Team.
Once at Moses Cone my fevers began to spike to 106 and I was having horrible drenching sweats during the night. My temp would rise around 10pm and then break around 2-3am. We would change the bedsheets at least 3-4 times each night when I had the fevers. My RD wanted to see what type of pattern my fevers had and how high they would go, we did this for 2 nights and then the RD set me up on an IV prednisone drip, to try to get the fevers to break. I don't remember much about that week, I just know I was sick. I was tested for everything again...RA, ANA, Lyme disease, hepatitis, HIV, viral infections, CMV, Epstein-Barr virus, Hodgkin’s Disease everything was negative. The only test that I was positive for was the Anticardiolipin antibodies, I had a very high titre with that. With the spiking fevers now, and the enlarged spleen, along with my sore throat, joint destruction, and my previous rash, my Rheumatologist diagnosed Adult Onset Still’s Disease. I stayed in the hospital about 2 weeks total.
He put me back on the Gold, and the NSAIDS, and 80mg of prednisone. After 2 weeks I was finally well enough to go home. It took a long time to get my strength back, and I still was extremely stiff and sore. A few months later my doctor suggested trying Methotrexate. At that time mtx was reserved for the most severe forms of RA. It had some serious side effects. But I didn’t worry. I needed to have a life again. About 4 weeks after starting mtx, I was doing really well. I was able to get my prednisone down to around 20mg, and then over the next few months I was able to get down to 10mg. I wasn’t on any NSAIDS either. By the fall of 1991, 2 years after my onset, I was feeling the best I had. The methotrexate was working, I was able to function and have a fairly normal life, although there were still lots of things I had trouble doing, like trying to run, or play sports, it was better than what I had been before. I tapered my prednisone down to 5mg and that’s where I stayed. MTX was controlling my fevers, I no longer had the rash, and my spleen seemed back to normal. I was still anemic but not as much as I was in the beginning. I did really good for two years with the exception of my left hip.
In January of 1993, I was having a lot of pain in my left hip and groin area. It seemed to get worse each day. Soon my knee hurt all the time along with my hip, and I couldn’t sleep due to the pain. The first of March I finally went to my RD and had him x-ray my hip. I was in so much pain, he thought I might have fractured it because the way I was walking, and how my foot would rotate outwards. Then he gave me the news. The disease had destroyed all the cartilage in my hip. There was nothing left, it was nothing but bone on bone contact. He told me I would need a hip replacement and that he had already scheduled a MRI for me, and referred me to an orthopedic surgeon. I was devastated, but I was also in so much pain, that nothing really mattered. I wanted the pain gone. I was also having widespread pain throughout my body. I thought at the time it was my joints even though there was no swelling, redneess etc. I just thought that the severe pain from my hip was causing my joints to flare and causing pain all over my body. I was having alot of trouble sleeping, but of course I was in pain. When I explained this to my RD he suggessted that I might have a pain condition called fibromyalgia. He did some testing by pressing on certain areas of my body. I about jumped off the table in pain when he would touch me. He prescribed a low dose tricyclic antidepressant called desiprimine to help with the pain and it did. Later on we added Zoloft and this combination has worked well with my overall pain and sleep problems from the fibromyalgia.
I had the surgery on April 7th. I had a few complications; not related to still’s however. But after that was all taken care of I was doing great! I didn’t have the pain anymore. I had a cementless type because of age and level of activity. I never used my crutches, even though I don't recommend doing that, but I was so excited that I could walk again. The surgeon did a great job. My prosthesis was very flexible. I was able to do anything I wanted. The next 3 years were pretty good for me. Well let me rephrase that, as far as the Still’s, well that part was okay, my personal life, well there were some rough times. A stressful break-up, stress at work, was kind of getting to me, but I never had any flares. As long as I took my Methotrexate every week I was fine.
I have been able to stop the mtx for about 6 months, but then the disease comes back with a vengeance. My joints swell, and become stiff, and I can barely walk or use my hands. My sed rate had jumped up to 75 after 7 months of not taking any medications. I’ve never been able to go longer than 6 months without mtx. I have continued to stay on 5mg of prednisone all these years.
I’ve had to have my hip revised twice in 1998. I developed an infection, so the prosthesis needed to be removed to treat the infection. I was on IV antibiotics for 4 months; thank goodness that is over with ( that's a whole other horror story!!)
Here is my x-ray 2 months after my revision. Ther dark space above the cup area is bone loss. It was the size of a tangerine, but it is filling in from the bone graft. It will take 2 years to fully heal.
In Feb of 1999 I joined the ranks of all the new Enbrelmaniacs. I stopped the mtx, and began taking the new drug Enbrel. It’s been 2 months and so far, so good. However my Still’s rash has decided to make a comeback. I have not had the rash in almost 9 years. It pops up in the late evenings, on my arms and sometimes my chest, but it disappears by morning. I’m hoping it’s not a sign of something to come. I will keep everyone updated on my Enbrel progress.
June 1999- Enbrel is wonderful!! No side effects, more energy, this has been the best drug by far that I have taken. I'm down to 1mg of prednisione. I have gone back to work and am very busy with my animals.
January 2000. Well I am still doing great on Enbrel. I have completely stoped the prednisone. I've been taking only one shot a week of enbrel and doing great. My last sed rate was 17! All my other labs were normal too.
May 2000
Still doing great, I no longer take any meds for the fibromyalgia. Im taking Enbrel about once every 2-3 weeks. Im having much fun out riding. We are in the process of moving in a few weeks, hubby is going to flight school so we are off to Alabama soon!!
Jan 2001
Still doing great with Enbrel, it's been 2 years since I started taking it my last sed rate was 2. Only problem is with my left hip from Osteoarthritis that developed due to the damage caused by still's early on in the disease. Most of the cartlidge is gone, eventually it will need a total replacement also. My ortho said my range of motion is 5 degrees, which isn't good. I take Darvocet for the pain, hopefully I can go a few more years before I need surgery.
Also the rash is back again, it pops up almost every night around 10-11pm and is gone usually by 1-2am. Im also having a sore throat in the evenings some, and some night sweats. All my other joints are doing great though. I think I will start increasing my enbrel back to 2 shots a week like Im supposed to and see if it helps with the rash and night sweats.
Jennifer Jay, Age 30
You can reach me at: timberwolf@snowhill.com