I was diagnosed with aggressive Adult Onset Stills Disease a little over a year ago. For the most part, treatment options are similar to moderate to severe RA. For the 117,000 adults in Alaska with a diagnosed form of arthritis, there are 4 Rheumatologists in the entire state and 2 of them only see Alaska Natives, so there's only two Rheumatologists for everyone else. I'm currently on 20mg Leflunomide daily because Methotrexate DS nothing for me, plus I get Remicade infusions every 3 weeks. This Wednesday is my last shot at Remicade (tripled dose) and if it doesn't work I'll have to start something harsher. Just curious if anyone has been in a similar situation. I should be enjoying my 20's but cant even walk up stairs anymore. I don't get the chance to talk to other people with arthritis so I wanted to try my luck here. Thanks everyone❤️
I'm new here, just joined from Alaska☃ Hoping to get ... - NRAS
Welcome to the site Zoy. Sorry you have found yourself amongst us especially at such a young age.
I was diagnosed with RA in my twenties. It is a lot to get your head round, never mind the body! I know someone who has Adult onset Stills disease. We have very similar things to deal with and adapt to. Our sense of humour and having a good old moan to each other helps us through our down times. It is always good to know that there is this forum to turn to. Being able to unload and ask questions of other people who have experienced different treatments is such a reassurance.
Unfortunately I have no experience of the treatments you have mentioned or of changing infusions. But I sincerely hope you start to respond to your treatment soon.
Hopefully you are able to find a support group in your country that meets up together. I found a group, mostly young in age when I visited my consultant at the hospital. One individual had left flyers with the receptionist who books patients in, asking if any others wanted to join a 'meet up' support group. It was a great way to make friends, meeting in a public space and having coffee together. E mail addresses could do the trick without making personal details available to all. I understand that where you live may not make this type of thing easy to organise, but it may be a good way to connect with others nearer you. It only takes one individual to make a move to try and connect others together.
Having real life support with other people who truly understand makes such a difference. Sending my very best wishes from my side of the pond to your side. xx
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