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I'm visiting a doctor for my Lupus in May. Advice from those with the disease?

  1. Julie Fletcher profile image77
    Julie Fletcherposted 4 years ago

    I'm visiting a doctor for my Lupus in May. Advice from those with the disease?

    I've been going downhill lately and finally found a doctor in my area that can help me. Any advice from others with Lupus and RA on what questions to ask? What pain killers are best? Nausea medication? Would love advice on that first visit!

  2. teamrn profile image70
    teamrnposted 4 years ago

    Hmmm, your first visit with this doc. I'll write the questions I'd ask him and you see if they 'fitL'
    1) make a list of those questions that you just put down and print it so you'll have something to go by. I'd print it in bold and a large type font; nothing worse than wanting to ask a question and not being able to see what it is, so it DOESN'T get asked
    2) start NOW making that list, and whenever you think of "gee, I'd like to know....." WRITE IT DOWN.
    3)Pain medications. That's a good one and depends on the cause of the pain. If you can avoid it (and ONLY) if you can avoid it, steer clear of narcotic analgesics, but the doc may think that's what is indicated. Antidepressants are good for some pain and anti-seizure medications (depakene, tegretol, neuron tin) are good fot other kinds of pain. I've been helped by kenalog injections. (a steroid which I normally wouldn't be taking, but my rheumatologist told me why-and I promptly forgot!-why that was preferable to a steroid dose pan. plaque nil is another med to ask him if you ought to be one
    4)nausea: I'll have to leave that one to someone else. I've not experienced nausea
    5)history-keep it brief, but he MUST know this history of your disease.
    6) take a friend with you (especially first visits when  you've a lot of questions) to remember what the doc said in response to your questions-or your friend can write them down.
    7) when you say you're 'going downhill', be very clear in your explanation of WHAT isn't working right and what is going downhill. Things like 'my muscles are so weak that I can't dress myself, or they're so week that it takes my 'x' minutes to dress. Or , this is the assistive equipment that I  use: walker, cane, etc. Best, Annie  BTW, This will be your first visit with this doc, he can either be a partner in your care in which you'll do better, or he can call the 'shots' and you'll be the 'patient.' I'm a nurse and see that when patients form  PARTNERSHIPS with their docs, their docs are more respectful of input from them and they 'do' better.

    1. Julie Fletcher profile image77
      Julie Fletcherposted 4 years agoin reply to this

      Thank you. I don't have anyone to take with me so I will print out all of my questions.

    2. teamrn profile image70
      teamrnposted 4 years agoin reply to this

      Julie, if there's no one to take with you, that's ok. But make sure the doc knows you have some questions to ask at some point and make the print of those questions BIG so you can easily read them. 'Breaking in' a new doc isn't fun and I wish u luck!

 
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