More specialised information

chicara Member Posts: 47

I was diagnosed with Still's disease at the age of nine. 40 odd years later I still show all the signs of the systemic disease, rashes, fevers, general feeling of being unwell. I have always known that Still's could also affect my lungs, heart and eyes but was never given an explanation as to how or why.

Recently I was in hospital for two weeks diagnosed with right parapneumonic collection and empyema and had to undergo right thoracotomy and right decortication. Although the consultants thought my Still's had caused these problems they seemed unable to tell me any detail as to how or why. Even my own rheumatologist, lovely as he is does not seem to have a comprehensive understanding of Still's.

I was wondering therefore if the helpline team know of any Still's specialist. I would really like to talk to someone who could tell more detail as to why Still's can affect the lungs and heart and how to best manage the disease if this happens. I have been told I cannot take methotrexate until my lungs are completely clear (which they still aren't 2 months later) because it is an immunosuppressant, which makes sense, but on the other hand if Still's is causing the problems surely it would help if it was well controlled. It all seems a bit confusing at times, hence why I would love to be able to ask questions of someone who has more extensive knowledge of this disease.

Sorry for such a long post.




  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Chicara

    I am a forum member but I did a quick search on here because a few people with stills have posted in the past. The following was the latest thread I found and I wondered if it may possibly be of some help to you or at least you will know that there are others out there with similar to yourself.

    Look after yourself,

    Elna x
  • chicara
    chicara Member Posts: 47
    edited 30. Nov -1, 00:00
    Hi Elna

    Thank you for taking the time and effort to find the post on Still's and reply to me, it was very thoughtful of you.

    I have read the thread you linked to, although it doesn't really tell me much more than I already know. I'm inquisitive I suppose and want to know all the details hence my desire to be able to speak with someone in the know about these things.

    It is good to know you are not the only one experiencing these problems though.

    I hope you are managing to keep reasonably well.

    Take care

  • helpline_team
    helpline_team Posts: 2,779
    edited 30. Nov -1, 00:00
    Hi Chicara

    I'm not surprised you want to know more. However the main reason information on how and why it affects the organs is difficult to to find is because it is not known. Part of the how is it is the inflammation that affects the organs and damages them but we cannot answer the why. This is similar to many types of inflammatory arthritis where the inflammation attacks certain parts of the body. In very simple terms it is the immune system in overdrive and thus not being able to differentiate between what it is supposed to be protecting and attacking.

    Unfortunately we do not know of a Stills specialist. However as in the case of most types of inflammatory arthritis even specialist cannot answer the details of how and why symptoms happen.

    I think you will probably learn more from talking to others with it though of course this will take longer.

    If you wish to speak to us please feel free to give us a call.

    Best wishes


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