Answers About Lupus Treatment

I put myself on the hot seat by divulging that I am both patient and physician.  I am not surprised that hard questions result from that.  I don’t mind moving from the exam table to the doc’s stool and answering whatever people ask, as long as it doesn’t constitute giving individual medical advice.  I cannot be a physician to anyone over the internet.  The following discussion refers to comments on the Treating Lupus: A Physician-Patient Perspective « Essiewb’s Weblog, published July 18, 2008. 

Regarding the diagnosis of lupus:  There is no organized external pressure for doctors to make fewer diagnoses of lupus.  There is always, from the time you enter medical school, pressure to make the correct diagnosis.  That means, for an honest, conscientious doc, if lupus was diagnosed without adequate criteria, or with incorrect interpretation of physical signs, continuing to seek the proper explanation for the patient’s illness.  There are more than 100 autoimmune disorders, and some closely resemble each other.  As we learn more about them, it is easier to distinguish one from another.  There are other rheumatic disorders, such as *fibromyalgia, which are not autoimmune but have symptoms similar to the autoimmune or collagen vascular disorders.   Most of us are aware that sometimes the most basic blood test for lupus can be positive, even when the disease does not exist.  That also provides a diagnostic challenge. 

From both the patient and physician standpoint, I have to ask, why would anyone resist having a more accurate diagnosis?  and, why would anyone want a diagnosis of lupus if they didn’t really have it?  I realize that uncertainty is difficult to live with, and sometimes it seems that having a bad diagnosis is better than no explanation at all, but we can’t welcome a wrong diagnosis and resent having it removed.  It serves no good purpose.

Next, regarding treatment for lupus: There are some things that are pretty much written in stone, that won’t vary from physician to physician or patient to patient.  Acute flares of a certain severity get high doses of corticosteroids like prednisone,  blood clots get anticoagulants like warfarin, and so forth.  The rest of treatment is something of an art and a judgment call for every decision. 

I have to emphasize that we are talking a LOT of decisions here:  To hospitalize or not.  Which blood pressure medicine to use, and how much.  To use anxiety medicine or not, and how much and how often.  To add another disease-modifying agent, and when, and how much, and how to monitor the drug’s effectiveness and/or side effects.  To stop other medications when the prednisone is increased or not.  To relieve the edema with a medication or to request bed rest with foot elevation and see how well the kidneys handle it.  That’s just for starters.

That doesn’t include the patient-centered decisions:  The crux of these is how well I know the patient.  Can I trust this patient with anti-anxietal medication or narcotic pain medicine.  Will starting these too early encourage the patient to neglect other personal resources for handling stress and pain.  Is this a patient who will follow a low-salt diet to help their blood pressure and edema.   Is this a patient who will contact me if there’s a medication problem or new symptom, or is this someone who only calls when there’s a complete crisis and things are out of hand.

You’ve probably noticed that your doctor uses a certain amount of triage with your problems.  Life-threatening stuff is always first:  make sure you know what you’re treating, and treat it in a way to keep your patient from dying.  Fine-tuning comes later.  Because we feel very strongly the responsibility for the life-threatening stuff, we can react very strongly when someone seems to question the use of our key weapons in the arsenal against the disease.  That can lead to some earnest preaching and nagging about taking corticosteroids and other disease-modifying drugs. 

Docs differ in style.  Our personalities and histories are an integral part of our relationship with patients.  The common denominators are a helluva lot of education and a sincere desire for you to be healthy.  That makes it hard when you compare one person’s treatment with another.  Conversation-not confrontation-can go a long way to clearing the air and getting answers with your own personal doc. 




*My personal feeling is that should not be a dual site with fibro-the causes, treatments, and prognosis of these two diseases are completely different.  The fact that many people suffer from both doesn’t make them similar.  I think it encourages fibro sufferers to look at their disease in a more pessimistic fashion; the fact is, fibro is not life-threatening and lupus is.  In general, medications used for lupus have more potential long-term consequences than medications used for fibro.  These populations are not the same.


4 Responses

  1. Another awesome post!

  2. I agree with your post. I have both fibro and lupus.. and by far the lupus is worse. Honestly I only notice the fibro when I am not in a lupus flare. I believe finding the right doc is one of the most important things for someone with lupus, you have to be able to talk and confide in the doc and trust them with your health. I have been reading some of your other blogs and love it, may I link yours blog to mine. I have just recently started mine and thus far I am enjoying it. It gives me atleast one goal everyday. Thank you for your blog!

  3. Excellent. A really useful, well written and considered post.

  4. The best advice I ever got was to keep looking until I found a neurologist that I could be comfortable talking to. I found her, she was the 6th one I saw in 3 years. But I trust her, and that helps me do what she asks. So it was well worth the effort to find her.

    I’m sorry you can’t do private practice anymore, but I’m glad you are able to continue to share your knowledge.

    I’m also really glad you are feeling better!

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