Anyone with uctd diagnosis for now?

Hi I have had a uctd diagnosis for 3 years in November, recently I have come to terms that this may be permanent and lupus is just part of it rather than a single cause. I wanted to reach out to people who also have uctd and feel like I did, like you don't have answers yet and you don't have a diagnosis. I want to tell you that you do have a diagnosis and you're not alone, I run a blog on blogger called the butterfly diaries, I also have a Facebook page, a twitter and a Google plus. Please if anyone needs advice, support or information come find me and I will do my best to either help you or point you in the right direction.

Love and spoons

Xxx Loubie xxx

16 Replies

  • I too have had this diagnosis for 3 years though I suspect I have had it since childhood. I am on plaquenil 200 mcg but this is way not enough.

  • I suspect since childhood too, it's been a long hard road! If you want anyone to chat to please feel free to add me or look for me on fb too, details are in a reply below. Xxxx

  • You sound like my twin but can't find your page

  • Hiya! I'm on facebook under pages, The butterfly diaries, or you can add me and I will send you an invite if you like? Loubie Smith , long brown hair curly with a small spoon necklace, got the rainbow pride effect on my profile picture :) xxxx

  • Hi

    I have UCTD. This is worth a read it explains a lot.

  • Hi :) I think I have read every page available online lol even the national Jewish health page hahah one of my blog posts has an in depth look at uctd and what it is, it's a two parter. Just used my knowledge and research over the last few years :) xxxx

  • I have had to do my own research too, I started being very ill 10 years ago went through a lot of professors and consultants in various departments all they could say was I was very ill but they didn't know why!! It wasn't until a neurologist had a light bulb moment and referred me to a rhuematologist that we started to get some answers and treatment.

  • It's horrible feeling like you are mental, from being a toddler I had health problems but was 21 before I got the uctd diagnosis and treatment. My rheumatologist has been useless, not helped me at all xxxx

  • Yes I was ill on and off when younger parents were told it's nothing to worry about she's still growing!! When I first met my Rhuemy she said I had had it all my life and it had been clicking on and off but this time it hadn't clicked off:( that was when I was 42!!

  • Great article! Thank you for sharing!

  • hi yes i have uctd lupus part of it along with fibromyalgia,inflammatory arthritis etc for me was misdaoagnosed as rheumatoid arthritis.

  • Hi - I'm 52 and was diagnosed with RA five years ago but will soon be under a new rheumatologist and I suspect the diagnosis will change to UCTD.

    I also suspect I've always had this disease but was only diagnosed with Hypothyroidsm about 14 years ago after a lifetime of severe eczema, butterfly rashes, alopecia and other minor but troublesome ailments.

    From what I've learnt on here there are many of us in this category and as I've failed to tolerate four disease modifying antirheumatic drugs to date - I'm resigned to trying to manage it myself with a low dose of steroids only. My most problematic symptom is a small fiber neuropathy which affects my arms, legs and face. Although I don't have any real organ involvement yet I do have early atherosclerosis, a large irregular kidney cyst, have had pneumonia this year and either a UTI sepsis or pancreatitis and several wound infections this year. I keep being told that I've just been very unlucky by my rheumatologist, GP and neurologist. Is this all just bad luck though? I'm not so sure!


  • My diagnosis has been revised from SLE to SLE/UCTD which I think fits my symptoms accurately. Treatment is Mycophenolate, Plaquenil & Prednisolone. At 48, I now find myself rarely feeling well and never pain free. I wish I knew what is caused by the CTD and what is old age . . .

  • I suspect I have had UCTD most of my life, but have been fortunate until about five years ago when everything flared at once. I was treated for suspected inflammatory arthritis, then rheumatoid, etc,etc....many years ago I had seizures for several years and now have migraines, but the overriding factor has been unremitting pain and fatigue. I thought I was lazy for years, but now realise I just crashed out long before my peers! Methotrexate and Plaquenil have made a significant difference, but it still feels a bit of a Cinderella disease and I wish it was flagged up a bit more. However, I do feel lucky that it has not affected major organs, and that there are many others out there, so I don't feel so freakish or isolated.

    Take care, all of you fellow UCTD-ers out there!

  • Yes, have UCTD/MCTD (US) that nearly became SLE but ANA failed to meet criteria. Taking Plaq, eight weeks now. Have the ENTIRE AI spectrum. Will go back on Levo- and Lio- after next endo labs. Plaq rebooted my thyroid and I sweated for an entire week. Hoping it stays where it is. Rather have it than full-on SLE w renal failure, which is where I thought I was heading. No answers. One good day, one bad one. Had to retire early. I vote for more basic research, not pharma v. pharma! --molly

  • Wow we are all in the exact same boat! It would be great to have some fellow uctd warriors on my page and as friends on fb! If any of you are interested please send me a like or a friend request :) im always interested in doing guest posts on my blog, sharing the story of another uctd warrior would be a absolute dream :) here's my fb page and the links to my blog posts are on there :)

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