Questions posted in the Neurology and Neurosurgery Forum have been answered by doctors from The Cleveland Clinic Foundation.

Question Title: Lupus & PN

Forum: Neurology Forum
Topic: Lupus

I am a 40something female. I was diagnosed with Lupus almost 20 years ago. Since then the lupus has been mild, no major organs involved other than pleurisy, mild asthma, and arthalgia. The lupus has been quiet (according to blood tests) for the past two years. One year ago I had foot surgergy after an automobile accident. After the surgery I developed painful peripheral neuropathy in feet, legs, hands, arms and face; I am ataxic; sometimes my legs won't move and I can't walk, and I am falling alot. The neurologist says the neuropathy is from lupus; the orthopedic (for accident) says its from the accident and surgery. My rheumatologist says it can't be from lupus, the lupus is quiet. However the recent blood tests I took showed low wbc (3.0), anemia, sed rate high (30), ANA (speckled) borderline 1:80. Negative Anti-DNA and normal complements.
I have been feeling so weak its hard for me to stand up sometimes. My rheumatologist says (after the recent blood work) that the lupus is still quiet. Now I don't know who to believe! My questions are:

1. Can someone develop neuropathy from lupus if the lupus is quiet?
2. With the test results that I have listed, should I see another rheumatologist; or does it really look like the lupus is still quiet?
3. Can complement levels be normal with active lupus?

I am in a lot of pain and am quite disabled. As much as I hate the thought of taking prednisone (I have been up to 40 mg.); at least if it's lupus - the predisone will make my condition better and I can get back to some form of normalcy. Presently, I am on no medication other than 75 mg. elavil for the neuropathy. I am totally confused about what to do next. Thank you for your attention.

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Dear Rose,

Thank you for the question. Approximately 10 % of patients with SLE will exhibit signs and symptoms of peripheral nerve involvement. In the majority of cases, neuropathy appears in the established cases and more advanced stages of the disease (in your case the former is true). Rarely it is the initia presentation. More often than not it is of the Mononeuritis multiplex variety (involvement of different nerves, i.e. median n. in L hand,
peroneal n. in the R leg, and ulnar n in the R hand) rather than the
distal symmetric variety (many nerves are affected simultaneously, affecting the distal (hands and feet) limbs.
Symptoms are similar, numbness and tingling, even weakness.
I tend to agree with the neurologist and the rheumatologist in that it is possible to have neuropathy in rather quiet SLE ( I have seen a couple of cases myself). Your SLE is indeed quiet based on those test results, and those are pretty good test for disease activity. I seriously doubt that surgery on one foot causes widespread neuropathy. Regardless of the situation,
the painful neuropathy is commonly treated with Elavil plus minus steroid, as you are currently are taking. Depending on the presence or absence of other factors your doctor may order other tests. BTW has anyone done EMG/NCS to establish the nature of the neuropathy and to confirm it ?? It is an important test.
IF it is a mononeuritis multiplex from SLE then you need to be on steroids (or higher dose of it). So it is very important to first establish the presence of neuropathy (EMG/NCSis very helpful) then look at the nature of the neuropathy and finally determine if it is related to the SLE so that steroids can be instituted.

Good luck and I hope the above information is helpful.
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