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Very good question, and one that we all have/are struggling with even now. For years, I depended on my rheumy because I did not have a PCP that was even remotely interested, and in fact, had suggested that nothing was wrong. Why was I even taking enbrel and mtx? so for a long time, I used my PCP as a source for referrals to specialists only. As a result, I never had anyone actually coordinate my care. It wasn't until I went to an infectious disease doctor that the pieces were finally put together, and I realized that I needed to find a PCP who actually wanted to coordinate my care. Now, I do have a new primary, and thanks to my infectious disease doctor, the new PCP is fully informed of my weird characteristics and complicated history (it always sounds better coming from another doctor rather than telling him/her yourself).
I agree with hippimom--it should be the role of your PCP. Specialists do not want to be involved with that unless they absolutely have no choice (as in a life-threatening situation).
I would find yourselves a good primary (internal medicine) doctor. I've been warned about going to a PA--AI disease is too complicated for a PA. My primary is not an internist, but he is well-researched and very thorough.