I appreciate your asking this question, as it raises a relevant issue regarding diagnostic tests. As everyone who reads this board knows, diagnosing lupus is not an easy task as everyone presents with different manifestations and laboratory tests. So your story is not uncommon. Happily, we have made some progress in this direction and there are several "biomarkers" that are being studied to diagnose and monitor treatment of lupus. Biomarkers are lab tests or imaging tests that can show evidence of a disease process or disease activity.
1. You are right that we do not make the diagnosis of lupus based only on blood work. Typically, you need 4 criteria to make the diagnosis of lupus. The new SLICC clinical criteria for lupus from 2010 are highly specific. (good at predicting which people do not have the disease and those that have it) These criteria require that you have a total of 4 criteria to receive the diagnosis of lupus. Of these 4 criteria, at least one must be a clinical criteria (rash, arthritis etc) and at least one must be a lab criteria. (ANA, DNA etc) If you fulfill these criteria, assuming that other conditions presenting similary have been ruled out, (for example rheumatoid arthritis has been ruled out by negative tests and the clinical features and x ray/MRI features, or hepatitis infection has been ruled out) the likelihood that you have lupus is close to 90%.
2. The Avise SLE panel is a panel of 5 tests that are performed to diagnose lupus. The results of the 5 tests are analysed to create a composite score. If your score is above a certain threshold the Avise SLE test is considered to be positive. This "test" was literally put to the test in a large multi-center study of 593 patients. In this study, it was found that the sensitivity (the percentage of sick people who are correctly identified as having the condition) was 80% and the specificity (he percentage of healthy people who are correctly identified as not having the condition, sometimes called the true negative rate) was 87%. Thus, the Avise SLE test is a good test for diagnosing lupus and if positive the likelihood that you have lupus is quite high.
Hope this helps. Wishing you the best in your journey. View Thread
Anti-histoneantibodies can be seen in lupus. About 50% of lupus patients have antihistone antibodies. However, over 90% of patients with drug-induced lupus have antihistone antibodies. Having antihistone antibodies does not mean that you'll have drug-induced lupus, and they can certainly be seen in systemic lupus.[br>[br>In terms of the ANA being negative, while double strand DNA antibodies are positive, this is unlikely. It means, that the methodology being used by the laboratory to test the ANA, is faulty. In general, the best method of testing for an ANA is by immunofluorescence. However, I think that the ANA test being negative in your case, was a false negative. The double-stranded DNA antibodies and antihistamine antibodies are likely real.View Thread
Recently, some studies have suggested that Calcium supplementation is associated with increase in heart attacks and strokes. However, this small study shows that Calcium up to 1000 mg/d seems to be safe in women. In my practice, I am recommending that patients with osteopenia or osteoporosis should try to increase dietary calcium, take 500 to 1000 mg/ day of calcium supplementation and perform weight bearing exercises.
Zostavax may be helpful, but is somewhat controversial. Some of the issues that are relevant to the zostavax and lupus are:
1. This is a live vaccine.
2. A low grade viral infection has been reported following the vaccine.
3. It is not clear, though there is significant concern, if using a live vaccine in patients who have active autoimmune disease might trigger a worsening of the autoimmune syndrome. This matter is currently under investigation and we may have some answers in the coming year.
4. Patients who are on immunosuppressive therapy may have a severe viral infection from the virus in the vaccine.
An option that I offer my patients with active lupus, who have recurrent attacks of shingles is to go on anti zoster suppressive therapy with acyclovir or valacyclovir.View Thread
I do not have much experience using alternative meds for BP. Especially in people with compromised renal function, a lot of the herbs have not been tested and might be dangerous as they may not be excreted from the body. Guided imagery, meditation may be beneficial and I'm not sure if acupuncture might be worthwhile.View Thread
I'm so sorry that things are not going great for you. I think you had reached out earlier with a similar question. If I remember correctly, your lupus nephritis was not responsive to cytoxan. In cases where the standard treatments are not working, we consider unapproved/ non-standard approaches.
There are numerous case reports that Rituximab might be of benefit in cases of lupus nephritis. As you may know, when Rituximab was studied in a controlled study, it failed to meet the primary end points. The trial design, where all patients were given high doses of steroids up front and the numbers of patients were not high enough to detect significant differences has been criticized extensively. This might explain why the drug did not meet the endpoints. Having said that many doctors in the lupus community, myself included, have had success in some patients with lupus using that drug. This might be an option for you to consider.
Additionally, we have been studying some medications for lupus nephritis including abatacept and we will know our preliminary data in the next month or so. A medication called epratizumab is being studied and Belimumab is also being studied in clinical trials for nephritis. Most clinical trials for nephritis require a recent renal biopsy, and I think that might be an issue for you given your past experience of bleeding after the procedure. However, depending on how bad your proteinurea is, there might be some trials that you could qualify for without a renal biopsy.
Nerve biopsies are useful to rule out vasculitis or an autoimmune cause of the neuropathy. In your case, the EMG nerve conduction has likely pointed to a spinal compression of the nerves and thus you might have been advised to undergo spine surgery. Given that you have lupus, it is possible that lupus could be causing the neuropathy. Usually, an experienced neurologist will be able to tell whehter the neuropathy is from lupus or from spinal nerve compression. However, occasionally, this cannot be easily determined and a nerve biopsy might be helpful. Please note that nerve biopsies can be falsely negative as we sample only a small nerve that may or may not be involved.View Thread
Your math is correct. Sorry that was a typo. I meant that the cumulative dose is recommended not to exceed 1000 grams. Most patients will reach that number after 5 years of taking the medicine.
In terms of the issue raised below by eyeinthesky below, there are several ocular side effects of hydroxychloriquine. The blurry vision that occurs in the first few weeks of starting the medication is considered a benign side effect and usually goes away after a few weeks of taking the medication.
The more serious toxicity of plaquenil, which is retinal toxicity, occurs after many years of use and occurs due to the deposition of the medicine in the retina. Per the new American Ophthalmological Society guidelines, this risk is much higher after taking 1000 grams. This does not mean that all patients who have had over 1000 grams must stop the medicine. Plaquenil remains a very effective, useful and safe medicine for most lupus patients. However, it means that very vigilant monitoring needs to occur and every patient should be screened by a qualified opthalmologist to determine if they have any signs of retinal involvement.