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  • Pre-Lupus?

    Hi All -

    I was recently diagnosed with "pre-lupus" - and am not sure exactly what that means. My list of questions for the doctor is growing by the minute but thought I'd post my story here for some input. It started about 6 months ago when I broke out in hives (after a medicine switch from a brand name to generic) - after the rash we switched me back to the Brand Name - but the rash has continued, off and on. I finally went to an allergist where they tested me for all kinds of stuff (mostly food, some enviornmental) and all came back fine. He decided to do bloodwork - he called to let me know that I had tested "slightly positive" for Lupus. (my ANA numbers were very high). I then went to my family doctor who said she wasn't sure it was necessarily Lupus - but maybe a connective tissue disorder, and referred me to a Rheumy. I had my first appointment with the Rhemy last Wednesday- and she said that based on the blood work, my joint pain (wrists, ankles, hands, knees), the rash and the way my joints looked - she said it is "pre-lupus". I asked if it would ever be full blown Lupus - and she said not necessarily, she started me on Plauenil and ran a boat load of other blood tests. I have a follow-up appt in 2 months; she said she would call me if anything showed up on the blood results. SO - I'm feeling confused, not 100% confident in the diagnosis, but mostly because I don't really know what "pre-lupus" means, and was caught off guard and not prepared to ask questions. I have other symptoms such as the fatigue, hair loss (not patches, but strands), and stomach issues.

    So, just looking for input, experiences, opinions - etc. And other questions I should ask the Rheumy next time I see her. Thanks in advance.

  • #2
    Hi writergirl04,

    Welcome to the forum. I can't say I've ever heard of "pre-lupus" before. I would think you either have it or you don't. On the positive side, they are not ignoring your symptoms and have at least started some treatment for you. Keep in mind that plaquenil can take several months to take effect. I guess I wouldn't be too worried about what they call it as long as they continue to treat you.

    All the best,
    Annette

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    • #3
      Pre-lupus is a diagnosis that is sometimes used when there are lupus symptoms but no evidence of major organ involvement e.g. kidneys, brain. It's a diagnosis that's not supposed to be used anymore but there are still many physicians that prefer it. The recommended diagnosis for what used to be called pre-lupus is now UCTD (Undifferentiated Connective Tissue Disease)

      Barb

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      • #4
        Hi Writergirl2004,

        Welcome to the forum, it is nice to meet you. You have found a great site with good information on lupus. Plus the members are very caring and willing to help you with their experiences of dealing with lupus or on that road to getting a diagnoses.

        Your allergist sounds like he is really on the ball.

        What ever label you get lupus/uctd is that they have started you on the right med. ( Plaquenil)

        Have a good look around the site and post with your questions.

        Love,
        Lyn

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        • #5
          Hi and welcome to the board,
          What I have understood, and this is the difference in doctors and the way they explain things........

          Pre-lupus has some of the symptoms of lupus but not enough to qualify for the ACR criteria. I agree with Lyn, you have the correct meds going and that is what matters the most.
          Start your list of questions for your rheumy visit. Take a copy for yourself, a copy for the doctor and present them when you have your next visit.
          Be aware it can take several months for the plaquenil to take full effect. So, if you haven't gotten any benefit by your next visit, be sure to go over it with the rheumy. If you are having rashes, other visible things, take pics and copies to the visit with you too.
          Good luck,
          Sally

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          • #6
            Hi all - thank you so much for your responses. It makes me feel good about the doctor I'm going to. I've come to the conclusion (as many of you) that I have a mixed connective tissue disease - many Lupus symptoms, but don't have all of the criteria (NOT that I'm complaining).

            I've been on Plauqenil about one month now and am not noticing a difference, I'm trying to be patient. The last few weeks I've had a lot of ankle/foot pain. The last couple days it has been horrible, I can hardly put weight on my left foot - pins and needles sensations with shooting pains up into my leg - does anyone else have experience with this? I started noticing it after taking walks (1-3 miles) but now it happens without any exercise. I'm feeling really uneasy because I leave for vacation (Hawaii!!) on Wednesday and I know we will be doing a lot of walking, and with the pain I'm in right now...My rheumy called in a rx for prednisone - as much as I want pain relief I'm a little hesitent to take it - any one have experience with this? Suggestions?
            Last edited by writergirl04; 04-04-2010, 01:12 AM.

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            • #7
              Hello again,

              I think you are referring to UCTD (Undifferentiated Connective Tissue Disease) rather than MCTD. They are quite different as MCTD is a mix of different "known" diseases whereas UCTD is when they know that it is an auto-immune disease but don't quite have the criteria to know which one.

              Plaquenil will take longer than a month to kick in - often between 3 and 6 months. Rheumies will often prescribe prednisolone to carry you through until symptoms get under control. Whether you want to take that step depends on how much pain you are in and also on whether there is a danger of your flare getting out of control without it. With your vacation in view, I think it might be wise to heed the rheumy's advice as a short course of prednisolone will be quite easy to come off. It is only if you stay on it longer-term that you would have to come off it slowly. How long is the script for and what dose? Certainly, even if you don't take it before leaving for the vacation, get the script filled and take it with you. It should work within about two days so if you need it, it's best to have it to hand.

              Katharine

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              • #8
                Hi there, and welcome.

                I'm with Katharine - speaking from my own experience...... I was given Plaquenil and Prednisilone (20mg) in October. At that time I had similar trouble as you with joint pains, and the pain and swelling in my feet was at times unbearable. I had a holiday in Rome coming up and was wondering if I was going to make it, but the treatment kicked in (the steroids I think) and I was able to really enjoy my holiday with only occasional mild pain. It made such a difference and I have no regrets.

                I'm now on a low dose steroid (and Plaquenil) and feel great.

                Later this year I'm hoping for a holiday to Russia, and I will definitely speak to my doctor beforehand and take a higher dose steroid with me, if I can, just in case I need it when I am away.

                Whatever you decide to do, I hope that you enjoy your holiday and aren't in too much pain. Remember to use high protection sun cream (I use factor 50).


                Take care

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                • #9
                  Hi again,
                  The pains you describe in your foot and leg sound similar to what they call "peripheral neuropathy". This can be any number of symptoms, but this sounds similar to what I get in both feet and legs. I suggest you ask your rheumy for a referral to a neurologist who has experience in dealing with autoimmune diseases. Sometimes the way to treat this is to use antiseiuzure meds. I know it sounds weird, but it works in the ways your brain accepts messages from the nerves. The meds help to branch this communication pathway. The good thing is that using the meds will help you to avoid this pain symptom.

                  Another thing is to look closely at the shoes you wear. If they aren't that cushioned, you may need to look for a different fit. At times it helps to get custom footbeds made for your shoes which redistribute the balance in your feet. These are not the "orthotics" many wear, but whole footbeds which replace the inner footbed in your shoes. I've had mine made at sport shops. I am also very careful with shoes I wear and have a separate pair for every day and one for walking on the trail near my home. I am also careful to avoid a lot of walking on hard surfaces, finding natural surfaces much more comfortable.

                  In eons past, neurologists were denying a lot of what we are finding that more and more people who have lupus are talking about. I don't know if it is because we are more outspoken, or that doctors are finally listening to those of us who have dealt with this companion for a long time. Perhaps because we are living longer and better lives, they are having to listen to us! I don't know really, and specifically don't care, just that they do listen.

                  I second those above who have cautioned you to be careful on the sunblock you apply on your vacation. I also suggest you take a UV proof umbrella with you so you have additional protection if you are in the sun for a longer than usual time. I would get the highest number sunblock I could find and apply it at least 3 times a day if you are out in the sun. Most important, have fun. Wear a 100% uv a&b sunglasses. The wrap-around style gives the best protection and I advise you to wear those at all times you are outside. A hat with a larger visor is a good idea as well. Most important to have FUN!!!!
                  Sally

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                  • #10
                    Thanks to everyone for your feedback and encouragement - it always makes me feel good that I have somewhere to go with my questions/symptoms. Katharine - I definitely ment UCTD - can you tell I'm on information overload?!
                    As for the Predisone - it's only for a few days, and if I'm not sure on the dosage, but if I remember correctly I take two pills than 1 1/2 than 1 - or something like that. I do think I'm going to take it. I went to my OMT doctor and she said I had a lot of fluid in my ankles and they were quite swollen.
                    Lynn and Sally - I have both 30 and 50 sunscreen - I'm not sure how the sun will affect me (if at all) I was fine last summer - and since it isn't full blown Lupus - but better safe than sorry!
                    Sally - I looked up info on the peripheral neuropathy and it sounds right on. I have an appointment with my rheumy the week after I get back from vacation so I will definitely discuss that. I already have a neurologist and am on an anti-seizure medicine. Although UCTD is new I am no stranger to health problems. Long story short - I had epilepsy - seizures caused by scar tissue - had it removed in 2004 - seizure free for 3 years than had weird symptoms including amnesia (for 6 hours) and a seizure - and they found fluid had formed in the surgery site and they went back in (2008) and drained the fluid. So, anyway - I remain on Lamicatal for my epilespy, and continue to see my Neuro once a year.
                    I fly out tomorrow afternoon for 11 days, so I will post once I get back - now I just need to kick this dumb cold I have!
                    Thanks again for all the replys and support - means a lot!
                    Jodie

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                    • #11
                      Have a great trip Jodie.

                      Take care,
                      Lazylegs

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