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Frequently Asked Questions

I have vasculitis, are my children at risk?

We do not know that there is any increased risk for vasculitis in your children. Increased risk for family members would suggest that there is either an inherited factor that is responsible for developing vasculitis, or that there is a common exposure that causes disease. To date, there is nothing to suggest that either of these factors causes vasculitis.

I have vasculitis, should any family member be tested?

No data suggest that the family members of patients with vasculitis are at a substantial increased risk for developing vasculitis. Testing to try to identify vasculitis in anyone, whether a family member of a patient or not, should be driven by specific symptoms or medical problems.

How can I find a doctor?

The first step to find a specialist with expertise in vasculitis treatment is to ask your primary physician. Many patients with vasculitis are cared for by rheumatologists. The American College of Rheumatology has a tool on its website to help locate a rheumatologist by geographic site and many local chapters of the Arthritis Foundation maintain lists of local rheumatologists. For physicians with expertise in vasculitis care, the Vasculitis Foundation can also offer suggestions. Some patients with vasculitis affecting specific organs need care from other specialists, such as pulmonologists (lung disease specialists) or nephrologists (kidney specialists).

Should I seek a second opinion?

This is a complicated question and raises issues about trust and confidence in one’s physician. Because of the complexities in diagnosing and treating vasculitis, patients with vasculitis should receive care directed by a physician with expertise in vasculitis. Seeking a second opinion might be considered if there is a problem making a diagnosis, or to help answer questions about therapy, especially if current therapy is not effective or complicated by adverse reactions.

What is remission?

“Remission” is a term used to indicate that there is no longer any detectable inflammatory disease activity. The use of the term “remission” implies that the disease may not be cured, and that relapses are possible in the future. Once a state of remission has been achieved the intensity of immunosuppressive therapy is usually reduced. This means that the dose of prednisone is reduced and that the first-line remission-induction agent (such as cyclophosphamide) is replaced by better-tolerated, milder forms of immunosuppression that are used more long-term to keep the patient in remission (such as methotrexate, azathioprine, or mycophenolate mofetil).

“Remission” does not necessarily mean that the patient is feeling perfectly well. This is because symptoms may be caused by either active inflammation associated with vasculitis, or by organ damage resulting from active disease or by side effects of medications used to put the patient in remission. “Remission” also does not mean that all serological markers of a specific form of vasculitis (such as ANCA or ESR) have completely disappeared or normalized.

The concept of “remission” is often expanded through use of the terms “partial remission”, “complete remission”, or “sustained remission”. Partial remission means that the disease has improved but that there is still some detectable inflammatory activity in at least some of the organs afflicted by the disease before treatment was started. Complete remission means that there is no more inflammatory activity detectable in any of the affected organs. Sustained remission implies that the state of complete remission has been maintained for at least six months.

A patient can be in remission on medication or off all immunosuppressive medications. The ideal state, of course, is to have experienced a sustained complete remission lasting long enough to allow for discontinuation of all immunosuppressive therapy and maintaining that state long-term without suffering a relapse.

What is a disease flare (relapse)?

A disease flare represents recurrence of inflammatory activity of the underlying vasculitis after a state of remission has been achieved with treatment. Usually disease flares are milder than the original disease presentation because the patient may still be on some immunosuppressive therapy that muffles the intensity of the inflammation or because symptoms get recognized faster by the patients and their physicians, and a renewed course of remission induction therapy is implemented earlier.

Disease flares do not always occur in the same way as the disease originally presents. The rule of thumb is that the sooner a relapse occurs (the shorter the time of remission has been), the more likely the relapse will be similar to the original disease presentation. In contrast, relapses occurring after several years in stable, possibly drug-free remission have a higher likelihood to present differently and involve other organs than those originally afflicted. These patterns certainly do not always occur.

What is the life expectancy of patients with vasculitis?

There is no simple answer. Specific data are not available and it is hard to answer as there are many different types of vasculitis, some of which are mild and others which are more severe. Some forms of vasculitis can affect vital organs and be life-threatening when the disease is active. Vasculitis can also cause damage to organs that can affect overall life expectancy. In addition, use of medications to treat vasculitis that suppress the body’s immune system can increase the risk of infection. It is best to address this with your own physician to take into account your particular type of vasculitis and problems that might have arisen from the disease and its treatment.

What types of laboratory tests should I get?

This question is difficult to address in general terms because there are a lot of individual factors that influence the need for specific laboratory tests. In principle, serial laboratory testing over time has two major goals. First, laboratory testing should screen for disease activity. Second, laboratory testing should look for toxicity of the medications used to control the disease activity.

The following battery of tests is usually sufficient for most types of vasculitis; markers of inflammations (erythrocyte sedimentation rate and C-reactive protein), a complete blood count (with differential cell count), a blood chemistry panel (that includes liver function tests and kidney function tests), and a urinalysis with urine microscopy (for forms of vasculitis that frequently involve the kidneys). The frequency of these tests depends on the individual situation (type of disease, organ system involvement, medications used, whether remission has been achieved, and the duration of remission, etc.)

In addition to laboratory testing, your doctor may also choose certain imaging studies such as chest x-ray, chest CT (CAT) scan, MR angiograms (MRI), or others, to follow specific disease manifestations in specific forms of vasculitis.

Should I be on a particular diet?

This is a general question that cannot be answered specifically without knowing the patient’s individual situation. A well-balanced diet following recommendations of the American Heart Association is usually sufficient. In patients with high blood pressure, a low-salt diet maybe necessary. Patients with renal insufficiency will have specific restrictions of protein and potassium intake. Specific dietary recommendations also apply to patients with diabetes, which in turn may be worsened by the use of glucocorticoids. A consultation with a dietitian who can factor in an individual patient’s specific needs is certainly a good option for some patients.

What is a clinical trial?

A clinical trial is a research study to answer specific questions about new therapies or new ways of using known treatments. Clinical trials are used to determine whether new drugs or treatments are both safe and effective.

How can I participate in a clinical trial

If there is a contact person listed with the trial information you can talk to them yourself, or have your doctor call on your behalf.

Where can I find more information on clinical trials for Vasculitis?

The VCRC has a number of research studies and clinical trials for specific diseases and you can find out more by visiting the VCRC Find a Trial page. There is also information available on all clinical research studies being conducted in the United States on the ClinicalTrials.gov website.

What is the Contact Registry and how do I join?

The VCRC Contact Registry is a method by which patients with Vasculitis can register themselves with the VCRC in order to be contacted in the future about clinical research opportunities and updates on the progress of the VCRC research projects. The contact registry is anonymous and free of charge. You can join the registry by visiting the VCRC Contact Registry page. Patients with Vasculitis are strongly encouraged to join the VCRC Contact Registry.

I live far from one of the VCRC centers -how can I contribute to research in vasculitis?

We realize that not everyone who qualifies for the research projects of the VCRC will be able to travel regularly to a VCRC Center to participate in studies. However, one option is be sure to enroll in the VCRC Patient Contact Registry. Not only will this ensure you are kept updated on new projects, but also new projects may be launched that you can participate in even from afar.

Why does the VCRC only study six types of vasculitis and why not study the type of vasculitis I have?

It would be great to be able to study every type of vasculitis since there are unmet scientific and clinical needs for each disease. However, there are limits to our research resources. We decided to concentrate on 6 different types of vasculitis, representing small vessel (Wegener’s granulomatosis, microscopic polyangiitis, and Churg-Strauss Syndrome), medium vessel (polyarteritis nodosa), and large vessel (giant cell arteritis and Takayasu’s arteritis). These diseases represent a broad spectrum of vasculitis types and were disease in which we thought it was feasible to conduct research. We may expand the number and type of diseases under study within the Consortium, depending on funding and research ideas.

It is important to remember that it is quite likely that new findings in one type of vasculitis can be beneficial in our understanding of the cause or how to treat other types of vasculitis.

How can I talk to others with vasculitis?

You find a list of support group’s leaders in the United States and internationally by visiting the Vasculitis Foundation’s website: vasculitisfoundation.org/support/domestic

I have a type of vasculitis not listed, where can I find more information?

The Vasculitis Foundation provide detailed information and links to resources on each type of vasculitis: www.vasculitisfoundation.org

If you have additional vasculitis-related questions that were not addressed in the list above, please submit them using the email link provided below. We will answer your question within 3-4 weeks.

Please include the following information:

  • Name (optional)
  • Location (optional)
  • Are you a patient with vasculitis or a family member or friend of a patient with vasculitis. If yes, please specify.
  • Your specific question

Questions can be directed to vcrc@bu.edu

Thank you for contacting us!

 
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