Confused - now auto inflammatory disease?

Hi - just wondered if anyone else has been rediagnosed from RA to an auto inflammatory disease. After meeting my RA nurse she has said that following my blood test results she feels that perhaps I have an auto inflammatory disease and not as originally thought RA. It seems difficult to find out what exactly an AID is and I'm not sure if I should be pleased or not. Do they last forever, do they affect internal organs or do you get better. I'm still on Predosoline and Hydroxine but am slowly reducing the dosage.  I must say although I still feel inflamed in ankles, toes, fingers etc but I am feeling not quite so fatigued or as much pain as I did a few months ago. Any advice would be appreciated. Thanks 

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  • I think they are now calling spondyloarthritis autoinflammatory rather than autoimmune.  RA is autoimmune, I think because of the fact that blood tests can measure the immune response, whereas you cant with spondy.  Not sure what other rheumatology disorders are now considered autoinflammatory.   Probably doesn't matter a lot in the grand scheme of things as long as you are still under the care of a rheumatologist and being treated, but you may want to ask what they are considering as a diagnosis.

  • This info seems quite helpful: saidsupport.org/autoinflamm...

    In a nutshell, it's saying autoimmune diseases like RA are your immune system *reacting* to some trigger, and getting it wrong, while auto inflammatory conditions are when there is an inherent problem with your immune system - something you're born with.

    If you're still inflamed, it doesn't sound to me like your disease is controlled, whatever it is. Maybe ask about whether you actually should be reducing your dosage, or trying something different instead...? That website suggests anti-TNFs are the right treatment for auto inflammatory diseases.

  • Thanks for sharing the link. Finally some light on the ever present fevers.

  • Your comment Something we are born with made me think . I am sure our parents counted our fingers and toes asked if we were ok and breathed a sign of relief and said Perfect our new baby. Little did they know the ticking time tobomb in our genes.

    Probably just as well.x

  • I'm not sure that a nurse is in a position to rediagnose you (or anyone else) and, in my opinion, she should have referred you to your rheumy specialist for further investigation/consultation. I'd go to my GP with what the nurse thinks and ask my GP to follow it up.

    All the best

    Ali

  • Thank you all for your advice - Much appreciated.

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