Hi to everyone I don't think I have posted before but regularly read comments and info on this site. It is very comforting and supportive

to realise that there are people out there that have similar if not exactly the same health issues and that I am not a hypochondriac as suggested by a lady consultant years ago. I was wondering if anyone can as i am now very confused. Years ago I was diagnosed with RA then about 7 years ago I was diagnosed with Lupus positive ANA and Ro positive ??? But now I have been told by a nurse.... Who has nothing to do with my condition that my diagnosis is connective tissue disease. This was stated on a letter she read on my hospital records, written by my lupus consultant. I am on plaquinel and have had my pain killer changed to Naproxen just recently by who i dont know. My consultant and GP haven't said a word to me about this ..... I am very confused as to what's happening now. Any ideas why the diagnosis would have been changed.

3 Replies

  • Lupus is a connective tissue disease too, it seems that although the doctor strongly suggested you have lupus, he was more conservative on paper and left it at CTD. As long as the treatment you follow is working, there shouldn't be any difference regardless of the label applied to the illness.

  • Hi

    Thanks very much for your reply purple top, treatment is working well apart from constant pain in muscles. I am very lucky not to have major organ involvement.

    Since taking plaquinel I don't appear to get the sun sensitive rash. I wondered if this means I can now go into the sun without fear of a flare up. Has anybody any experience regarding plaquinel and no longer getting the Lupus rash.

  • Hi Rhodes62, I have been on plaquanel for a few years now, although there is a slight improvement it causes a flare if you are out any length of time, so would advise caution and the usual, long sleeves, hat, total block, it's a pain but alternative is worse, sorry I can't offer good news x

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