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Tips for Managing Your Vasculitis

Successfully Manage your Vasculitis

Receiving a diagnosis of vasculitis can be overwhelming. Suddenly you’re diagnosed with something you have (probably) never heard of, can’t pronounce or spell correctly and are facing a huge learning curve of medical terms to learn.

The Vasculitis Foundation encourages patients, their family members and caregivers to learn as much as possible about vasculitis so they can effectively manage the disease.

Vasculitis is a family of over 15+ diseases and it is important that patients understand both their “specific” disease and vasculitis in general.


Assemble your medical team

Patients with vasculitis often have multiple specialists treating the disease. It is very important that your medical team be experienced in treating vasculitis.

Almost all patients diagnosed with vasculitis have a rheumatologist on their medical team. A rheumatologist is an internist or pediatrician who received further training in the diagnosis and treatment of arthritis and other musculoskeletal diseases. Also called “rheumatic” diseases, these diseases affect the joints, muscles and bones.

Other types of specialists may include but are not limited to:

  • Cardiologist (heart)
  • Dermatologist (skin)
  • Hematologist (blood)
  • Infectious diseases
  • Nephrologist (kidney)
  • Neurologist (nervous system)
  • Ophthalmologist (eye)
  • Pulmonologist (lungs)
  • Urologist (urinary tract and urogenial system)

Collect business cards from all of your physicians’ offices. (You can buy inexpensive business card holders at local office supply stores.)

Make sure all of your team members know of each other and provide a contact list with their contact information (phone/fax/email/website) to put in your medical file at each office. (Include a date on the list so you can update regularly.)

Identify a team leader. The leader will be responsible for conveying to the entire team decisions on treatment, changes in medications, procedures being performed, test results and side effects and other concerns.

Make sure your other health care professionals – i.e. family physician, dentist, eye doctor, chiropractor, know about your diagnosis of vasculitis.

Ask your medical team how they prefer to communicate with you. Do they:

  • Email (ask if they charge to read/respond to emails?)
  • Talk to the office front desk
  • Talk to the physician’s nurse
  • Does the office use electronic records? If so, can your records be mailed to you if you prefer (if you have limited or no computer access)?
  • How are medical records (test results, etc.) distributed between the other team members?

Start a journal – either electronic or three-ring binder/spiral notebook to collect all of your medical information together. Track your appointments, procedures performed, test results and all medications, including doses and any side effects.

Write down questions that you think of between visits and then before each visit, prioritize them so that the most pressing questions are asked first and answered.

Ask someone to go with you to appointments to take notes. Fatigue and brain fog are often side effects of the medications patients take and both can make it hard to concentrate on what the physician is saying.

Consider taking a tape recorder to the doctor’s appointment. Once you record the meeting you can load the file onto your computer, or even send that digital recording to other family members. (Make sure to ask the physician if it is okay to tape the meeting.)

How to have a productive doctor’s meeting

Today, patients take an active role in their health care. You and your doctor will work in partnership to achieve your best possible level of health. An important part of this relationship is good communication. Here are some questions you can ask your doctor to get your discussion started:

About My Disease or Disorder…

  • What is my diagnosis?
  • What caused my condition?
  • Can my condition be treated?
  • How will this condition affect my vision now and in the future?
  • Should I watch for any particular symptoms and notify you if they occur?
  • Should I make any lifestyle changes?

About My Treatment…

  • What is the treatment for my condition?
  • When will the treatment start, and how long will it last?
  • What are the benefits of this treatment, and how successful is it?
  • What are the risks and side effects associated with this treatment?
  • Are there foods, drugs, or activities I should avoid while I’m on this treatment?
  • If my treatment includes taking a medication, what should I do if I miss a dose?
  • Are other treatments available?

About My Tests…

  • What kinds of tests will I have?
  • What do you expect to find out from these tests?
  • When will I know the results?
  • Do I have to do anything special to prepare for any of the tests?
  • Do these tests have any side effects or risks?
  • Will I need more tests later?

Understanding Your Doctor’s Responses is Essential to Good Communication.

Here are a few more tips:

  • If you don’t understand your doctor’s responses, ask questions until you do understand.
  • Take notes, or get a friend or family member to take notes for you. Or, bring a tape-recorder to assist in your recollection of the discussion.
  • Ask your doctor to write down his or her instructions to you.
  • Ask your doctor for printed material about your condition.
  • If you still have trouble understanding your doctor’s answers, ask where you can go for more information.
  • Other members of your health care team, such as nurses and pharmacists, can be good sources of information. Talk to them, too.

Source: National Eye Institute; Last Reviewed March 2009

Questions for the Hospital Staff

Hospital Stays and ER Visits

Talking with a doctor during a hospital stay or in the emergency room (ER) can be stressful at any age. This section has tips to help you.

Hospital Schedules

Most hospitals have a daily schedule. This means that things like your doctor visits, medical tests, and meals will be at a similar time each day. It may be helpful to know this schedule and talk to your doctors and nurses about how much choice you have about your daily schedule. Make sure you know what time your doctor will visit you so that you have your questions ready.

Questions you may want to ask your nurses or other medical staff in the hospital:

  • How long do you think I will be in the hospital?
  • What doctors and other medical staff will take care of my health?
  • When will I see my doctor?
  • What will be my daily schedule during my hospital stay?

What to Bring to the Emergency Room (ER)

A visit to the ER can be especially stressful. It may go more smoothly if you can take along:

  • your health insurance card or policy number
  • a list of your medications
  • a list of your health problems
  • the names and phone numbers of your doctor
  • one or two family members or friends.

Some people find it helpful to have this information with them at all times.

During your ER visit, ask questions if you do not know what a doctor or other medical staff is doing, such as what medical tests are being done. Make sure you understand what the ER doctor tells you about your health, or ask him or her to write it down.

Also, make sure you know if there is anything special you need to do after you go home from the ER. For example, if you have a bandage, find out when and how to change it. Tell your regular doctor(s) as soon as possible about your visit to the ER.

Questions for the ER Staff

  • Will you talk to my regular doctor about my care?
  • Do I need to make special doctor visits for my health problem?
  • Can you write down what I need to do to care for my health problem?
  • Is there someone who speaks my language and can explain what I need to do for my health problem? (If you speak a different language.)

Source: NIH Senior Health; Last reviewed January 2011

Note:  Have a plan in place in case of emergency. Where is your doctor on staff? Ask your doctor (ahead of time) which hospital you should go to. Be prepared that the ER doctor may not know much about vasculitis and you may need to familiarize some of the ER personnel about your condition.

Talking to Your Doctor

More and more, today’s patients are playing an active role in their health care. Patients and doctors work closely together to achieve the best possible level of health care. An important part of this partnership is clear communication. Asking the right questions-and obtaining quality information about prevention, diagnosis, treatment, and recovery-help ensure safety, prevent errors, and improve health. For example:

• Sharing questions about prescriptions with your physician can prevent taking too much or too little medicine
• Being honest about symptoms can help doctors order the right tests and make the right diagnoses
• Clear instructions after an operation or hospital stay may be the difference between complete recovery or re-injury and relapse

Taking along a family member, friend or caregiver to help you communicate with your doctor can help. So can writing down your questions or concerns in advance of your appointment. NIH offers several publications that can also help promote meaningful interactions between patients and doctors.

Source: U.S. Department of Health and Human Services, National Institutes of Health; Last reviewed September 19, 2012