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Thread: Doctors are confusing me !

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    Question Doctors are confusing me !

    I was diagnosed by a dermatologist last year after going in with sores on my head. I had many lupus symptoms but family practice doc just wanted to put me on Prozac ! The dermatologist did biopsy and lab work. Called a week later and said I do have lupus and my labs show early stage kidney failure !
    Went to rheumy and was put on placquinil and steroids.
    I called the doctors office last week about a flair ( exhausted,malar,joint pain,itching). The PA said that the placquinil would take care of it because I only have discoid lupus ?
    If I only have discoid lupus why do I have all these other symptoms ? Why did my labs say early stage kidney failure ?
    I just give up and figure I will just have to deal with it...

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    Aaaaah yes - the GP who attributes everything to "Depressed Woman Syndrome" and ignores all evidence to the contrary....(can you see my eyes rolling?)

    If your kidneys are affected (or even if you just feel lousy), PLEASE DO NOT JUST "DEAL WITH IT" - call back and make an appointment with the Rheumy, and make sure s/he knows the PA blew you off. You only get one set of kidneys and they're pretty important....

    And especially if you're recently diagnosed, they really need to be observant to understand exactly what's going on. Autoimmune diseases run in packs, so it's possible that not all your symptoms are caused by one thing. If the steroids aren't helping, they need to know WHY - or if the side effects are causing problems, they need to know that too, and adjust them. Plaquenil can take up to 6 months to start working, and can have some troubling side effects in the first few weeks (nausea, dizziness, vivid dreams, bowel function issues, etc), so keep that in mind, too.

    In any case, it's not good practice for a doc to give you a diagnosis like that, stick you on steroids (which are pretty serious medications!), and kick you back to the curb with no follow-up. If that's the treatment you are getting, you should probably find a new Rheumy. Once they know there's something autoimmune going on, they should watch you pretty closely for the next year or more to make sure there's nothing ELSE going on. It can take a while to get a full picture, and that requires attentiveness.

    Please don't give up on feeling better, though....it can be a long road, but it's your health at stake and that's the most important thing you've got!!! In the end, yes - usually you gotta' suck up some discomfort and live with it. But your doc should never blow you off. S/he should always at least TRY to help you!!!!!

  3. The Following 3 Users Say Thank You to SleepyInSeattle For This Useful Post:

    running girl (04-28-2012), Saysusie (04-19-2012), tgal (04-28-2012)

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    I can't give any better advise than what SleepyInSeattle has given you. I just want to reiterate that you must take control of your health care. You know it is not in your head and your symptoms are real.
    Ask your rheumy to order a 24 hour urine test (if that has not already been done) to determine if, in fact, there is evidence of damage to the kidneys. With reference to your flare up, may times doctors will direct you to up your dosage of Prednisone to get you through the flare, then slowly reduce your dosage back down to a maintenance dose. You might want to ask about that possiblity.
    I don't know how long you've been on Plaquenil, but as Sleepy mentioned, it can take up to six months or more before you see any significant results as it is a cumulative medication and must build up in your system.
    Has your rheumy made any follow up appointments with you? If so, when is your next appointment? Whenever that is, do take Sleepy's advice and inform him of the PA's statements. Also, between now and then, keep a detailed journal of your symptoms, your meds, when your symptoms are worse, what you feel like when they worsen, how long it lasts, when you feel better, what your activities were when you feel worse and when you feel better. DO NOT let any doctor brush you off (that includes PAs). Learn as much as you can about the disease, its medications, its treatments and how it affects you. In this way, you can have informed conversations with your health care team and you can work with them to make knowledgable decisions about your health care.
    I wish you the best and let us know how you are doing. Whatever you do, do not give up!

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

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    hi lorik,

    i see you already have good advice.....
    i just wanted to stop bye and say hi.

    hi


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    Thank you for your info ! It's really hard to get past the PA at rheumy office. I'm in a community of 140 thousand and only 4 rhuemys. I have an appointment in July but will try to get in sooner.
    This disease is so confusing and I have a lot to learn. Again Ty

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