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Thread: Relatively Recent Diagnosis. Questioning if it is even Lupus now

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    Default Relatively Recent Diagnosis. Questioning if it is even Lupus now

    I am a college aged male and I started getting these blister like bumps towards the ends of my fingers ranging in size from a sesame seed to a pea in diameter. They don't throb, but they sting when irritated/rubbed/etc. They would always start small, and then flare up when I aggravated them via something like opening a bottle of water.

    Prednisone and Naproxen did very little if anything to reduce the swelling when I was first diagnosed with Psoriatic Arthritis 14 months ago.

    I then went to a second doctor who diagnosed Cutaneous Lupus with the help of a skin biopsy of one of the lumps. (Blood tests all normal) She noticed I had really cold hands so she put me on 30mg of Nifedipine to dilate blood vessels and improve circulation. The problem persisted even through the summer and I then went to 60 mg this winter. The only difference I feel is that I get dizzier when I drink. No warmer hands, very little improvement in reducing blister frequency (if any). I was also told countless times I could get a butterfly rash but still have yet to experience it.

    Should I request another medication? Or should I even question the second rheumatoligist/dermatologists diagnoses of cutaneous lupus?

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    hi kyle,
    sorry i am not going to ofer advice,
    i am not thinking clearly at the moment.

    but i did want to say hi and welcome.

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    Saysusie (01-06-2012)

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    Quote Originally Posted by steve.bryce View Post
    hi kyle,
    sorry i am not going to ofer advice,
    i am not thinking clearly at the moment.

    but i did want to say hi and welcome.
    I ALWAYS appreciate you doing all that you can Steve...Sending you warm thoughts!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    steve.b (01-06-2012)

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    Kyle;
    My standard advice: Always Question Your Doctors..especially if you are not satisfied with the medication and/or the treatment. If you feel that you have seen no improvement and that the current medications are not working, then by all means, ask for more tests..ask for a different medication, and if your doctor does not respond favorably..ask for another doctor! Most importantly, never stop fighting for your right to be treated, to get relief from your symptoms, and to get answers to your questions!

    I hope I helped

    Peace and Blessings
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    Saysusie
    Look For The Good and Praise It!

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    Quote Originally Posted by Saysusie View Post
    Kyle;
    My standard advice: Always Question Your Doctors..especially if you are not satisfied with the medication and/or the treatment. If you feel that you have seen no improvement and that the current medications are not working, then by all means, ask for more tests..ask for a different medication, and if your doctor does not respond favorably..ask for another doctor! Most importantly, never stop fighting for your right to be treated, to get relief from your symptoms, and to get answers to your questions!

    I hope I helped

    Peace and Blessings
    Namaste
    Saysusie
    Thanks, I'm just stumped at the moment since I've had about 30 vials of blood drawn since last year and nothing suspicious has shown. I like my current doctor so I think I'm going to have to talk more about possibilities and medications. I just hate rheumatology and the gray haze that sits over it as I'm sure everyone else here does as well.

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    Hi Kyle,
    You're right about rheumatology! I've found that most rheumys are really hard to deal with.
    Psoriatic arthritis is just one of my AI issues. I have several, so my doc in Texas called it Mixed Connective Tissue Disease.
    I had a bumps much like yours on my chin 18 months ago. My PCP called it guttate psoriasis. By the time I saw the rheumy, it was nearly healed, so she blew it off and didn't believe me. She doesn't seem to believe what my Texas doc said, either. They are so frustrating!
    As Saysusie told you, keep trying until you get some results and find the right meds that work for you.
    Hugs,
    Marla

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    Hi Marla
    A thing I do which may help you and others, I take pictures of my rash when it is up or my hands when they blister or peal. I have an iPad which takes pictures and I can flick them out when seeing a dr.
    Hope this helps others!
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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