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Answers tagged lupus: Page 1 of 1

Tini from Edmonton asks: I am a lupus patient and the pharmacist and my insurance company said that my prescription drug Mycophenolate, which is quite expensive, may not be covered.  What should I do?

Mycophenolate is a commonly used medication in the treatment of lupus and other connective tissue diseases.  In rheumatology, many medications are used “off label”, meaning they do not have formal Health Canada (or FDA, etc.) approval for a particular use.  However, through many studies and years of experience, we know these medications bring significant benefit to the management of rheumatic conditions and are appropriate to use.  Despite this, companies have not asked health authorities for more formal approval and without it, insurance companies may not always reimburse the cost.  If this is the case, we strongly encourage you to discuss this with your rheumatologist.  This is not an unusual situation for your rheumatologist and they often have access to other means of ensuring you can take the best medication for your condition.


Rhyse from Canada asks: How do I get my doctor to test for Lupus?

Unfortunately, there is no “test” for lupus.  Lupus is best diagnosed by combining a good history (talking with you), a physical exam and correlating those results with blood tests.  A ANA test is a good test to rule out lupus.  If it is negative, most people do not have a lupus.  It is not a good test to diagnose lupus.  While you have to be ANA positive to have lupus, most people who are ANA positive do not have lupus.  If an ANA is positive and you have other symptoms that suggest lupus, then a referral to a rheumatologist is often in order.


Norma from Alberta asks: I have stable lupus.  Can I get the COVID-19 vaccine?

Please visit our COVID-19 vaccine information page, which we will keep updating as more information becomes available.  At this time (January/2021), there is no information to suggest the currently available COVID-19 vaccines are unsafe for those with lupus or taking any medications for lupus.  That applies to all rheumatic conditions, in fact. If you are still not sure after reading the available information, please contact your rheumatologist.


Cindy from Calgary asks: I tested positive for the ANA blood test. How can I get a confirmed diagnosis and treatment right away, if confirmed?

An ANA test is a non-specific test which may be associated with autoimmune diseases.  In rheumatology, that means systemic lupus or other connective tissues diseases.  An ANA test does not confirm a diagnosis.  In fact, 10% of the general population has a positive ANA test and the majority – more than 95% of them – do not have and will never have lupus.  To diagnose lupus or another connective tissue disease, it requires you and your doctor or rheumatologist to review your symptoms and overall health, complete a physical exam, and then pursue investigations based on that information.


Travis from Calgary asks: Do rheumatologists treat Raynaud’s phenomenon?

Raynaud’s is a condition where upon exposure to cold, the peripheral parts of the body – fingers and toes, but sometimes nose or ears – can become painful and change colours from white to blue to red.  It is certainly a condition that rheumatologists may see. Raynaud’s can occur in individuals “just because”, often starting as a young adult.  It can also happen in association with other rheumatic diseases, including rheumatoid arthritis, lupus, and scleroderma.  A rheumatologist can assess a person for Raynaud’s, make suggestions to help, and also ensure the person does not have any underlying rheumatic disease too.


Shawna from Drumheller asks: My Father has been diagnosed with Crest Syndrome.  I have gone to my family physician because of this family history and have found through some basic testing that I am ANA+. They have tested for lupus but nothing come back. Is this something that I should have further investigated or should I not be concerned?

For everyone else, CREST syndrome is now more commonly referred to limited scleroderma, or systemic sclerosis.  CREST stands for Calcinosis, Raynaud’s, Esophageal Dysmotility, Sclerodactyly and Telangiectasias, which are common but not complete manifestations of scleroderma.

An ANA test is a non-specific test on its own.  Approximately 10% of the population is ANA+, and over 95% of them will never have an autoimmune disease.  The most important thing to do, whether or not an individual is ANA positive, is to always monitor for manifestations of illness and to follow up with your physician at that time.  For more on lupus, click here.


Anna from Port Alberni, BC asks: I really have no symptoms, but my doctor is concerned that I have mixed connective tissue disease because my RNP test is positive.  What should I do?

Mixed connective tissue disease (MCTD) is similar and has some overlap to systemic lupus.  By definition, an antibody test called RNP should be positive in MCTD.  However, as in many conditions and tests in rheumatology, a positive test does not necessarily diagnose a disease.  Conversely, a negative test does not always rule out a disease either.  To truly make a diagnosis of MCTD, lupus, rheumatoid arthritis, or many other rheumatic diseases, your doctor/rheumatologist needs to review your personal history with you, complete a physical examination, review the appropriate tests and put all that information together to make an informed diagnosis.


Jack from Edmonton asks: I have been told I have skin lupus, but is there such a problem?

While our website focusses on systemic lupus, there are other forms of lupus, particularly those that affect only the skin.  Dermatologists usually treat these forms of lupus, not rheumatologists, with topical medications or medications like chloroquine or hydroxychloroquine.  It is not uncommon that a rheumatologist will see a patient with “skin only lupus” to make sure they do not have any other manifestations that suggest the skin is in fact only one component of systemic lupus.


Molly from Portland asks: In regards to Lupus, I was interested in learning about the connection between how high an ANA titer was and disease activity and/or severity. Is there any way someone with a low titre could have more activity and/or more severe signs and symptoms than someone with a higher titre?

In 2013, most patients who have systemic lupus must be ANA positive. Conversely, a negative ANA essentially rules out a diagnosis of systemic lupus. However, an ANA test is not typically used to follow disease activity. Therefore, a higher titre does not correlate well with disease activity. Other investigations, including markers of inflammation, complement levels, and other antibodies correlate better, but even then, it is not a perfect tool.


Michelle from Sunny Island Beach asks: I have RA and Lupus and have been taking Methotrexate and Plaquenil in combination with rituximab. My insurance will no longer cover Rituxan but it will cover Humira or Enbrel. Is it possible to replace rituximab with a TNF blocker? My doctor told me I can’t “step down” from rituximab to another medication.

For rheumatoid arthritis, there is no clear evidence to suggest any biologic when used under optimal conditions is better than another. A patient would never be stepping down between different biologics, just switching. However, patients with lupus do need to be cautious with TNF blockers as they can exacerbate their disease. Rituximab is considered safer for lupus patients.

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