Patients of Adult-Onset Still's Disease Association (PASDA)
Case Studies
AOSD affects people in many different ways. Often AOSD can go undiagnosed for long periods of time as it is very difficult to put fixed parameters on the symptoms. When the AOSD patients that created this site first got in touch with one another, we were struck at how different each person's case was. Therefore we felt it would be helpful if some of us wrote down our experiences so far, firstly to see if any correlations could be made but secondly to show other sufferers that you don't need to have all the symptoms in the same way to have AOSD. Finally we also thought it would be helpful to detail the treatment we have had and how we have responded to it. Again, this is not to dispel or replace any information your medical professional might give you, it is simply to show you as much of the picture as possible for when you come to make your own decisions about your treatment. We always need more though - please contact us to send us yours!
Carol's story
I was 29 when I got AOSD. Previously I was very fit and healthy, I did lots of running and swimming, I played hockey, I didn’t smoke and I only drank probably what most 29 year olds will admit to drinking in a week!
One day, four months before getting married, I was away with work and due to fly home that evening. Over lunch with my boss, I realised that my right knee was quite sore, but I didn't think much about it. Over the course of the afternoon, my knees and hips became so sore that I couldn’t walk, and by the time I made it to the airport my legs were covered in a strange pink rash. Needless to say, I wasn’t allowed on the plane!
I was taken by ambulance to the local hospital where I was given some paracetamol and ibuprofen while they ran some tests. A few hours later, the rash had not subsided but the pain in my legs was more bearable, so even though the test results were “extremely bizarre” (in their words), they put it down to a virus and sent me on my merry way. When I woke the next morning in an airport hotel, I felt shaky and sore but just wanted to get home so I managed to get on the next plane. When my fiancé got home from work, he saw that the rash had crept all over my arms and face, and I could barely move with inflammation. He realised straight away that I needed to go to A&E.
For the next 5 weeks, I was transferred between five different hospitals, all testing me to try and find a diagnosis. I suffered from severe joint seizures, spiking fevers, complete loss of appetite, vomiting, chest pains, and I was completely covered in the rash. I was given diclofenac, tramadol, cocodamol, but nothing made any difference for long. Finally, and quite by chance, I was seen by my current rheumatologist who was the first to suggest AOSD. After a few days of yet more tests to eliminate all other possibilities, the prednisalone started to kick in. I was on 40mgs a day, with omneprazole, for about 6 weeks and then, when I started to get some muscle strength back, I was slowly weaned off – just in time to get married.
I am now 33 and, after two children, my condition is under control. I am not taking any medications except occasionally Ibuprofen if the stiff joints get too bad. My rheumatologist tells me that AOSD is more prevalent in women than men, so perhaps this explains why it seems to flare up whenever I’m on my period, and is controlled when I am not ovulating (i.e. either pregnant or breastfeeding). However, as I write, I have been neither for four months now and I only suffer for a few days each month from the rash and an overall feeling of stiffness. I feel very very lucky indeed.
Su's story
In 2012, aged 46, I was working two jobs, going to the gym three times a week and had spent a week in Turkey with two of my three ‘kids’ (all in their 20’s now!) and life was good!
One day in July, I was working and noticed I had a sore throat, nothing much but thought I better get it checked as I worked in a nursing home with vulnerable people The doctor assured me everything was fine but a couple of days later I was worse, had fever spikes every evening followed by rigors, I was starting to ache all over and joints were getting stiff. After five days I was in so much pain and could hardly get out of bed, plus I now had a rash, mostly on the inner legs ands feet. I was nearly crying in pain at this point but the doctor just sent me off with painkillers and antibiotics. In retrospect I should have gone to A&E but you trust the doctors know what they are saying so you comply. Needless to say the antibiotics did nothing and the painkillers did little to resolve the pain or swelling. Seven days after the sore throat started, I could barely walk and had to hold onto my husband and the wall to get down the corridor. My doctor immediately sent me to the hospital.
I then spent a month undergoing a myriad of tests while they tried to determine what was wrong. I was put on a cocktail of various intravenous antibiotics including one they call the ‘domestos mix’ which is apparently meant to kill any infection, but of course I didn’t have one. I also had MRI and CT scans as well as endoscopy to rule out infections. I had so much blood taken that my veins refused to give anymore and I had to have a mid-line put in. It is very disconcerting when you have doctors around your bed saying you’re a mystery and they don’t know what’s wrong with you!
During the first three weeks I still had the fevers, rash, swollen joints and stiffness to the point I couldn’t get out of bed. I completely lost my appetite and still had the sore throat and so they tried tube feeding but I just couldn’t stand it and they had to remove the tube. I lost two stone during the month I was in hospital. There was also the time when the ward was staffed with several agency people and on one particular night I asked one of them to keep an eye on me cos I knew my temperature was starting to spike but I was just so tired (who can sleep in hospital?) and the next thing I remember is being brought round with several doctors and others with wet towels covering me, fans trying to cool me off and being in so much pain I was literally screaming as they tried to lay me flat, I don’t remember much else but the other patients on the ward told me they were really worried about me and that one of them had gone to get the nurse because I wasn’t responding to anyone. It was a scary time.
So after I had been tested for, among other things, malaria, enterococus, Hep B and C, bartonella, toxoplasma, brucella, q fever, parvovirus, plus more that I never heard of, they finally got a Rheumatologist to look at me who concluded I had Adult Onset Still’s Disease. I was put on high dose intravenous steroids and the effect was amazing. They started them on a Friday evening and by Saturday morning I could move my hands and the swelling had dropped significantly. After another week, a full month in hospital, I was allowed to go home. Of course I still felt really ill but at least now I had a diagnosis and had hope of getting better and returning to work. Little did I know how much my life had changed in so short a time.
Since that time I have been trying to reduce the steroids from 40mg and am now down to 25mg, got to 15mg but started to feel really ill again. Have tried methotrexate but it didn’t agree with me – it made me feel sick, wiped out and barely able to get out of bed. I have recently spent two weeks in hospital after being admitted through my doctor due to sharp pain in upper right side of chest. Again, MRI scan, many tests which all proved inconclusive although I may have a kidney stone so I have to go for endoscopy to check. Once these tests have been done my Rheumatologist wants to start me on Cyclosporine to try and reduce the steroids but I sometimes think the effects of these powerful drugs are worse than the condition. However I will try it and see if it helps because at the moment I feel I can’t do anything without becoming exhausted.
My worse problem at the moment is sweating. I have had a hormone test which shows I am post-menopausal and am awaiting an appointment from the endocrinologist who took bloods and 24h urine sample to test adrenal and other gland functions. The sweat literally runs down my face, back, legs etc and its really debilitating as it goes on all day and night several times an hour. Interestingly the Still’s rash becomes more evident during these bouts and although my skin flushes red all over my temperature is below normal, as low as 35.5deg. I would be interested to know if anyone else has experienced this as a symptom or whether something else is going on alongside the Still’s.
I am lucky that I’m not in much pain at the moment and feel for those who are as I have been there. My knees are inflamed and feel ‘detached’ almost like they are on strings which is weird. I do feel tired quite often, to the point when I need to lie down, especially early evening, and, like most people, tend to overdo things when I am having a ‘good’ day but suffer two days later when I can barely get the energy to get out of bed.
A bit of history might be of interest to some people, if only to see if they have similar experiences. When I was three I apparently had rheumatic fever and spent six months in hospital on complete bed rest. I wonder if this was undiagnosed Juvenile Stills or coincidental. I also remember in my early teens going to the doctor with leg/joint pain and being told it was ‘growing pains’ again I wonder if its related. I have asked my Rheumatologist to look at my notes to see if there is any information that could shed some light on these incidents.
If you have any questions about my story or if you just want to chat you can email me at borgania@hotmail.com . I also use Facebook and Whatsapp but can give you those details via email if you want them. While there is no definitive test to diagnose Still’s, for those who are interested the test results which determined my Still’s were – CRP 350, Serum Ferritin 3227, Iron 3, Sore throat, Rash, Spiking fevers, Negative tests for antinuclear antibody and rheumatoid factor, Arthralgias or arthritis for at least two weeks.