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  • Connective Tissue Disease

    Hi All, Finally got my diagnosis yesterday and was prescribed 400mg of Hydroxychloroquine daily to ease the symptoms. Upon learning what I could about Lupus prior to my diagnosis and conversation with the Rheumatologist yesterday, I am confused as to what the difference it between Connective Tissue Disease and Lupus............Can anyone advise please? When I asked the Rheumatologist....he couldnt tell me? Also, I am bricking it re the side effects of possible hair loss from the meds....did anyone else lose a lot of hair?

  • #2
    Hi, as I understand it, SLE is a connective tissue disease, and where there are more immune disorders involved then would be slated as mixed connective tissue disease. Your Rheumy should know this. I had lots of hair loss, and hair growth while on prednisone. Doin ok now, I think. Normal amounts as normal is. There is so much to learn about lupus. There's always something new.
    Good luck J@j@n.


    • #3
      Hello there,

      Often rheumy's will give the diagnosis of Connective Tissue Disease when a patient doesn't fit the specific criteria for a differentiated label. Your rheumy may suspect lupus and there may be enough criteria to support a connective tissue disease but you may not have enough criteria for it to be considered lupus, so a rheumy prefers to give an undifferentiated diagnosis such as CTD. It's a way of recognising that yes you have some form of CTD but it hasn't fully evolved enough for them to be sure of which one. It's all the same treatment and often our symptoms are similar.

      In regards to losing hair, I was losing quite a bit prior to treatment, this was one of my symptoms from the disease itself. Plaquenil (HCQ) improved my skin and hair. I am on mtx which causes a little bit of hair loss but it's not dramatic and compared to what I was losing before it's nothing. Good luck with the plaquenil


      • #4
        Hi JanJan,
        Connective tissue is just about all fibrous tissue in the body, including blood. So, when you get a diagnosis of mixed connective tissue disease, you are in essence being told you have more than one of these little things going on. If your only symptoms were from lupus, then you most likely would have gotten just lupus as the diagnosis. But, because most of us have more than one thing going on, we often get the diagnosis of MCTD. In no way is it pushing lupus aside, it is recognizing it, but adding something in to it as well.


        • #5
          Hello j@nj@n

          It's good to have a diagnosis and know a little better what sort of disease is affecting you so you can start living with it and get on the right treatment.

          I must say it's a bit startling that any doctor can't explain about CTD and lupus but very surprising that a rheumatologist can't! Connective tissue is what holds everything in our bodies together and what makes movement possible You will find more sophisticated explanations on Google! There are several sorts of connective tissue disease: some are congenital - people are born with them for no known reason; some are inherited; some are acquired through injury or, like osteo arthritis, through wear and tear. A few are called autoimmune CTDS - they develop for largely unknown reasons. Lupus is one of these but there are variants and lupus- like illnesses that haven't yet been given any specific name. They are characterised by the presence of autoantibodies which develop as the immune system gets mixed up and starts attacking its own tissues as if they were foreign to it. Lupus is a serious d,iagnosis although the symptoms are not always very serious, that should not be given lightly because it has serious implications for example, for getting insurance and also on employment prospects ( even if it shouldn't legally).

          There are only 4 specific symptoms - skin and kidney disease proven to be lupus related and a couple of autoantibodies, but not everybody with "lupus" has these symptoms. In such cases a diagnosis of Undifferentiated Connective Tissue Disease is better to have, and more doctors are being strict about diagnosing SLE if the specific criteria are not present. Mixed Connective Tissue Disease is the name given to a particular set of symptoms that tend to be experienced together.

          Hydroxychloroquine, usually called by its brand name Plaquenil, is the basic treatment for the lupus like illnesses and other medications are added if need be. HCQ is not an immunosuppressant and does not normally cause hair loss.
          Pre- existing hair loss as a symptom of disease usually stops as the the medicine gets the disease under control. HCQ is an incredibly important medicine for general disease control and has numerous useful side effects. I suggest you start at a lower dose, to give your body the chance to get used to it and reduce any gastric side effects which are quite common. Always take with food.

          Good Luck
          Last edited by Clare.T; 03-03-2011, 10:03 AM. Reason: Typos


          • #6
            I have a label of Undifferentiated Connective Tissue Disease for exactly the reasons described in some pof the previous posts. I have some signs and symptoms of lupus type illnes but not the specific criteria. I an on hydroxychloroquine too. 400 in winter when I tend to flare and 200 in the summer. I've had no side effects from that med - and no hint of any hair loss. Hope you find the meds helpful - they make a huge difference to me - when I forgot to take them on holiday with me I ended up with a massive flare. Well worth taking in my view.


            • #7
              That is the dx I just received. Starting Plaquenil today. When I first started going to the Rheumie my ANA was negative and no other test except for my Antihistones were positive. My ANA is becoming stronger and stronger. But my other tests look fine. SO my doc gave me the UCTD dx yesterday. She said that being my ANA was neg and now getting stronger and along with my symtpoms, she is sure something is "brewing" in there. SHe does semise Lupus bc she has seen my facial rash and other issues..but for now we call it UCTD.

              I know it has been said to me alot and it is true......Sometimes its not about the Dx u get...its about getting treated!! I am grateful for that now bc this doctor is the first to take my symptoms into consideration and still continue seeing me after my labs were good? She bleieved me and now she is treating me!!


              • #8

                That is good news that you are now on treatment, I don't know if you have been told but Plaq can take a very long time to start working, usually 3-6 months and sometimes up to 12 months. So don't worry if you do not see an improvement straight away. I suffered a lot of hairloss prior to going on treatment but as my Lupus has become more stable my hairloss has become less and less, don't worry about it unless it becomes noticeable. My hairdresser always says, don't look at the hair falling out, look at what is left!

                I was given a diagnosis of MCT to start with which was changed to SLE after my symptoms became more apparent. I started off with a negative ANA and now have a very strong positive one as well as enough criteria for a SLE diagnosis. It really doesn't matter which one you have as long as you are getting the correct treatment for your symptoms.

                Cally x


                • #9
                  Thank you everyone for your responses and providing me with more information I need. Take care. x


                  • #10
                    Thanks for the information Clare, I totally agree - it's very startling when the Rheumy doesnt know the answers.....each time I was asking questions to differentiate the Lupus & CTD he answered very vaguely that they are similar but "we" dont really know much about it. Next question asked - response - "its difficult to advise as they are similar". I do understand that there are similarities between the two. Just glad in one sense that I got the diagnosis and have proven that it isnt in my bloomin mind. I also have nephritis but not diagnosed as Lupus Nephritis. I got some answers to some questions from the rheumatologist. Don't suppose you know how one finds out how it has been brought on? Whether it be hereditory or through injury etc?


                    • #11
                      Researchers haven't found the cause for Lupus yet. There are some theories involving the environment, your hormones and heredity. Now that more research dollars are being spent on Lupus maybe a cause will be found.

                      Take care,