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Thread: Hello

  1. #1
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    I'm new here too. My rheumatologist believes I have Lupus and started me on Plaquenil. I'm not sure if that's a firm diagnosis or a best guess, either way the Plaquenil seems to be helping me.

    My journey started 8 month ago when I got a very itchy bumpy rash. It was symmetrical and, over time, continued to spread. About a month later I developed Raynaud's and mouth sores. I had numerous biopsies which were inconclusive. In February my doctor did some blood tests and found my ANA was positive 1:320 and sent me to a rheumy.

    My rash doesn't seem to be consistent with what I've read are the typical Lupus rashes though I'm hoping to find some help and information on this forum. I'm glad I found it and look forward to meeting more people here.

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    I'm new as well. Welcome, this is a great group. As far as rashes go, I was either on Mayo or Cleveland Clinic website and I saw on an illustration that lupus does indeed present with rashes. This illustration showed the rashes on the inside of the arms from the wrists up to the elbows. That's exactly where I get my off and on rashes. Mine are sometimes itchy, sometimes not. They last for minutes and then they're gone only to show up elsewhere. I also get red spots on my knuckles and wrists and then I know that's where I'll start feeling pain shortly. I'm undx'ed; have to wait until Aug for an appt with a rheumatologist.

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    hi running girl,
    there is no proper rash for lupus.
    some doctors whant to see what is in the text books.
    if it is different, they dismiss it.
    but lupus effects everyone slightly differently.
    so even things like rashes present different on different people.

    ihope you sort out things.
    many of us have a difficult time with doctors
    others find it easy to get a diagnosis.

    once again welcome.

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    Welcome. There is a lot to learn here, so snoop around the posts and ask questions.

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    Hi running girl, welcome to this great group! I have seen all kinds of pictures of what are believed to he lupus rashes. I get blisters that look almost like a herpes breakout on my arms from the sun. I've been to a dermatologist and she said unless a biopsy was done, she could not be certain & gave me steroidal cream. It worked great but the visit told me nothing as to what made the sun do that to me. I get a butterfly deep red flush on my face but it has no dimples on it. Everyone seems different in the pics, but the shape is pretty clear on the malar rash.

    Good luck & a welcome!

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    Thank you all for the warm welcome and good advise. This site is great and the more I dig, the more I understand that I have many more symptoms. The fatigue and "fog" are so clear to me now.
    My doctor has actually been really good. She is more convinced that I have Lupus than I am. But again, looking around the site , maybe it's true.

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    Hello running girl,

    A lovely warm welcome to our family of WHL and you'll learn about Lupus and what it involves venturing through the threads.

    I'm on plaquenil the same as yourself it's good with your skin and after about 6mths when it's fully working in your system it's helps your joints and your system. It's the second time around for me with plaquenil but just after 5wks last time it cleared my skin.

    I have Raynauds like yourself and i get the sores by the mouth and cracks and when you see the Rheumo specialist ask for steriod based cream to help your face and the rash you have but after so long you must give it a great for at least 6mths in between as my Dermo did it with me because they're an aging cream and thin your skin but excellent for removing a flare.

    I'll add some info below on Raynauds for you, so you know the symptoms it can cause.

    It will be nice getting to know you Terry xxx

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    RAYNAUDS SYMPTOMS

    What are the symptoms of Raynaud's?
    Typically, symptoms develop in fingers when you become cool. For example, in cold weather..

    •At first the fingers go white and cool. This happens because the small blood vessels in the fingers narrow (constrict).
    •The fingers then go a bluish colour (or even purple or black in severe cases). This happens because the oxygen is used up quickly from the blood in the narrowed blood vessels.
    •The fingers then go bright red. This happens because blood vessels open up again (dilate) and the blood flow returns. This may cause tingling, throbbing, numbness and pain (which can be severe in some cases).
    Many people with Raynaud's do not have the full classic colour changes, but develop bouts of uncomfortable, pale, cold fingers. Only the fingers are affected in most cases. In some cases the toes are also affected. Less commonly other extremities of the body are affected, such as the earlobes, nose, nipples or tongue. Each bout of symptoms can last from minutes to hours.

    Raynaud's phenomenon is usually mild, with infrequent, brief bouts of symptoms that last just a few minutes. Sometimes it is moderate with more frequent bouts of symptoms that last longer. Rarely, it is severe with repeated frequent bouts, with each bout lasting longer periods of time..

    .What causes Raynaud's?
    .Primary Raynaud's - when the cause is not known
    In most cases there is no known cause (more than 9 in 10 cases). This is called primary Raynaud's. The small blood vessels in the fingers, toes, etc, just appear to be more sensitive than normal to cool temperatures. There is no other underlying disease. Symptoms are triggered more easily in some people than in others. Even mildly cool weather, or getting something out of the freezer, can trigger symptoms in some people. Strong emotion may also trigger symptoms in some cases.

    Usually, all fingers on both hands are affected in primary Raynaud's. It also tends to run in some families. Women are affected much more often than men. It usually first develops before the age of 30. There are no other symptoms apart from those described above, and symptoms go completely after each bout..

    .Secondary Raynaud's - due to an underlying cause
    In less than 1 in 10 cases, there is an underlying cause. This is called secondary Raynaud's. Various conditions of blood vessels, joints, muscles, nerves or skin can cause secondary Raynaud's. For example, scleroderma, rheumatoid arthritis, multiple sclerosis, systemic lupus erythematosus (SLE) and other 'connective tissue' diseases. If you have secondary Raynaud's you will normally have other symptoms in addition to the symptoms of Raynaud's. The Raynaud's is just one feature of the condition. For example, you may also have joint pains, rashes, joint swelling, etc.

    Often the underlying condition is already present, and you may develop Raynaud's as a complication. Sometimes the symptoms of Raynaud's occur first, and other symptoms of the underlying condition develop weeks, months or even years later.

    In secondary Raynaud's, symptoms may first begin in just one or two fingers on one hand. This is in contrast to primary Raynaud's when all fingers on both hands are typically affected. Certain medicines may also cause secondary Raynaud's as a side-effect (see below).

    Hand-arm vibration syndrome (vibration white finger) is one common cause of secondary Raynaud's. This is caused by using vibrating tools regularly over a long time. For example, it occurs in some shipyard workers, mine workers, road diggers, etc. It is thought that repeated vibrations over time may damage the small blood vessels or their nerve supply..

    www.patient.co.uk › Information Leaflets (Put raynauds in the search section and more will show on it)

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    I just wanted to stop in and welcome you to WHL. There are so many wonderful people here and such valuable information as well. Please make yourself at home. Feel free to look through the old threads or start new ones if you wish. Welcome to the WHL family!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  13. #10
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    Thank you all. You are right, this is a great group.

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