I’m 24 years old I was diagnosed with Adult Onset Still’s Disease 5yrs ago after 4 months of being bed bound and losing almost 3 stone in weight. I was on Prednisone steroids starting at 60mg (top dose) and gradually brought down and put on Methotrexate 20mg which I stayed on for about 2 years. Due to the side effects of metho making me feel sick and just gross I just decided to come off of them on my own (sounds foolish) but after this I was able to carry on as normal and I didn’t have a single rash, joint pain, fever or any feeling of being unwell or anything Still’s related for almost 2 whole years... until the other day!!
I felt the horrible pain in my throat a week ago but still carried on and went out drinking that night... and then the next day woke to find the rash all over my arms and legs alongside a throbbing head from the copious amounts of alcohol I had drunk the night before. I then had to go and have my jabs for Thailand that same day as the hangover (as I go in 3 weeks) which were typhoid and the polio, diphtheria and tetanus jabs so this obviously alongside the hangover and what I thought was the flu coming on wasn’t a fantastic mix. Then came the spiking fever and painful joints about 2 days later I was put on 30mg of steroids by an out of hours dr (as I spoke to them on Saturday after not being able to take anymore of the pain) and when I saw my consultant today (3 days later) he told me to come off the steroids because he wanted to make sure it was 100% Still’s disease and not just a virus or anything that could have come from the jabs. This afternoon though after seeing my consultant and having NONE of the symptoms whilst sitting in his office he looked at me like I was making it all up, understandably if I had none of the symproms, however tonight all of my legs are covered in the Still’s rash and I can feel that ache in the back of my throat again.
I just wondered if anyone else has experienced going through remission for a couple of years and it coming back again? I’ve never met anyone else with this disease and it can be quite a lonely one especially when you see your friends living such “normal” lives - I appreciate Still’s is not the end of the world and there’s always someone out there worse than me - but it’s just a frustrating one to live with!
I forgot to mention - I always believed that this disease was related to some sort of stress I’ve heard that auto immune diseases can be caused by stress and when I was 18 I fell pregnant and lost the baby which brought on a lot of emotional stress for me and then Still’s swooped in a year later. Then after that calmed down and I thought I’d gotten rid of Still’s, my dad passed away a year ago and things in my household have been very uneasy and now Still’s has flared up again. I feel like emotional stress comes out this way for me rather than through what most people would see as grieving.
Let me know your thoughts I’d be really appreciative of any feedback at all.
Love, P x
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PM193
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Aww bless you. I have never heard of it but many auto diseases I haven't thou got 3 different ones myself.told can be brought on by stress.my Mum died and I was ok before then just got worse.One thing got ok for a year til I collapsed after told not to take meds night before n that day before colonoscopy. Was hospital for month n in wheelchair 6mths and I still can't get back to walking properly.now just sold house so guess hello here comes more illnesses.
I had to cancel holiday in 2016 n claim on insurance.I am going on that holiday next week.I know you will be distraught if you can't go but you don't want to be abroad and so ill. I do hope you have a magic turn around.Stress when I was younger didn't damage me at time.
I’m so sorry to hear about the passing of your Mum as well as your suffering, it all sounds horrendous. I thought I was bad with one auto immune disease but 3! You are such a trooper! I hope you are able to get back to walking again and something is able to help you get back on track.
That’s the thing - I don’t want to have to cancel my holiday but you know it’s going to have to happen if I’m miles away, though my dr has prescribed me with enough steroids to see me through the holiday if I do have a painful flare.
Our body’s can be strange things can’t they? I hope you have a magic turnaround too! Sending lots of healing your way
and it does include both infectious diseases and stress.
But these auto-immune diseases seem to come and go anyway whatever we are doing and it's very easy to link a flare-up to the last thing that has happened. Sometimes it just seems to happen out of the blue...
Hope you get sorted out soon. Remember to keep a symptom and sign diary and a photographic record of any swollen joints for your next appointment!
I also have Stills disease. I'm 28 and was diagnosed in December 2017. I think mine was triggered by stress too as was going through an awful time at work where I had lawyers involved etc.
I'm so sorry that you're suffering, stills flares are the worst especially as it always comes at a time you're going through stuff emotionally too.
I'm not too sure what advice I can give in terms of the disease as its still very new to me too but just to say i understand as a fellow sufferer of this disease.
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2 years in and still dont know if its RH
Trying to avoid stress related flare
Biologic not working after a 2 week break
After how long since diagnosis did your RA become better controlled or in remission?
Unsure about what treatment I can have after 2 biologics
