Illness Anniversary

Hi Everyone

Today, 12 December, I am 'celebrating ' 29 years of being diagnosed with undifferentiated connective tissue disease!.

I'm interested to know from fellow forum users how likely is it that the illness could become straightforward Lupus after all this time or will it stay at UCTD?.

Hope you are all as well as possible and looking forward to your lovely replies.

Many thanks MistyX

6 Replies

  • Hi Misty 14. I am in the same boat. I don't even know what the difference is. So I am also looking forward to your replies.

    Take care

    Babs x

  • Hi Babs

    How is your health at the moment, improved I hope?.

    The difference between Lupus and UCTD is that UCTD is a collection of symptoms spanning RA, Scleroderma and Lupus. Our bodies can't make up their minds which CTD to be. Hope that helps explain it. X

  • Happy 'anniversary' Misty! I've suffered from autoimmunity for 25 years so I'm hot on your heels. My disease pattern seems to have become more disorganised with time, shows signs of acceleration rather than burning out and I actually wonder if UCTD is restricted to the 3 diseases you mention. I detect increasing overlap in myself of many more than just the 3 and have decided that, for me, there are no parameters whatsoever. Differentiation seems unlikely now . . .

    We're you actually diagnosed with UCTD in the 80's? Information was so much scarcer then. I remember poring over the medical Encyclopedias in the library looking for Lupus info (my original dx). There was no thought of questioning our Doctors then, we didn't have access to anything other than what they told us.

    Best wishes to you Misty. Keep well and stay warm xx

  • Hi Clareb

    Thank you for your lovely message which I can so relate to!. I'm definitely not the mild version it can be as struggle to reduce steroids. It shows no sign of burning itself out!. What treatment are you on?. Maybe yours is trying to become one illness after all this time as it's accelerating.

    I was diagnosed in the 80's the same and realised how similar it was to Lupus and pored over books just like you!. Weren't we made to feel in a small not possible minority as diagnosis so difficult whereas today it's the other way round!. Research and awareness has helped tremendously. It's only recently thanks to this site have I fully understood what UCTD was . I never regarded it as much of a diagnosis!. Hope your as well as possible. X

  • This is strange, I wrote a response yesterday but it doesn't seem to have appeared! I swear I wrote it, I haven't imagined it!

    Wanted to say well done for making it all this time and please tell us how you did it!

    Also to say that if after all these years you haven't progressed to full blown lupus, it is unlikely that you will now. Unless there is something major happening in the future, such as menopause (if you haven't already been through it) or some traumatic event that could tip the balance. But even then I'm not convinced that it will. Going back to the fact that there is a genetic predisposition to these autoimmune diseases, if you don't have the genetic makeup for full blown SLE (which you don't seem to have given the longevity of UCTD) then no matter what happens, you won't get it.

    So again, well done for managing it so far, hopefully things will get better as you get on and the disease burns itself out eventually.

  • Hi Purpletop

    Thanks for your lovely message and answer which does explain why recently being in a very active phase and having what appeared to be lupus symptoms , my bloods still refused to be positive for it!. I'm definitely not the mild version of UCTD that it should be and my Rheumy said recently I will never come off the steroids. I'm struggling to reduce them to a safe dose as it is!. He's keeping a close eye on developments and says he always will!.

    I can't believe the length of time and price I've paid but the way I've coped is keeping a positive attitude and a stubborn streak. I've never wanted it to win and been very lucky that all Consultants over the years have wanted to help me when I've developed new symptoms!. Not always easy to keep positive!.

    Good luck to you for your upcoming important results. Fingers crossed. X

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