Pain-Free Living

Vasculitis Management

By Kurt Ullman, RN

Your vasculitis management plan will depend on a number of different factors. Read on to find out how this condition can be managed so you can live your life to the fullest.

First-line treatments

How your vasculitis is treated depends on what kind of vasculitis you have, how serious it is, and your overall health. Some types of vasculitis get better with time, while others may require medication. Vasculitis treatment usually focuses on controlling the inflammation and/or the immune system’s response.

For milder cases, a person may only need to take over-the-counter pain medicines. Doctors often recommend acetaminophen, which can reduce pain, as well as aspirin, ibuprofen, and naproxen, which can reduce pain as well as inflammation.

Your doctor may also prescribe a corticosteroid, such as prednisone. The side effects of corticosteroids can be severe, and may include weight gain, diabetes, and osteoporosis (bone thinning).

Talk with your doctor to make sure you clearly understand any side effects that might be associated with any medicine you are prescribed.

Second-line treatments

If your vasculitis doesn’t respond to first-line treatments, you may need drugs that limit the immune system cells responsible for the inflammation. Among the drugs that you might be prescribed are azathioprine (brand name Imuran) and cyclophosphamide (Cytoxin). Your doctor may also prescribe methotrexate (Trexall) or one or more of these “off-label” medicines: mycophenolate (CellCept), adalimumab (Humira), and infliximab (Remicade); all of these suppress the immune system in some way. “Off-label” means that a medicine has been approved by the US Food and Drug Administration to treat some medical condition, but not the one for which it is being prescribed. This commonly occurs when research shows that a drug put on the market to treat one condition may also help treat another. Doctors may legally prescribe a drug for uses other than the one (or ones) for which it has been approved. However, if you ever wonder why your doctor has prescribed a particular medicine for you, ask.

Outcomes

If caught early and responsive to treatment, vasculitis can often be cleared up entirely or sent into a state of remission. Vasculitis in remission will have no symptoms, though symptoms may flare up from time to time.

The timing and likelihood of flares can be difficult to predict. Some forms of vasculitis and some people are more prone to flares than others. If your vasculitis has recurring flare-ups, get to know the signs of an impending flare. That way, you can talk to your doctor about treating a vasculitis flare when it’s still in its early stages.

Also, be watchful for any new vasculitis symptoms, or signs of side effects from your treatment regimen. If your vasculitis goes into remission, your doctor may start slowly taking you off your vasculitis medicine. If he does, both of you should be particularly watchful for flares.

Sometimes vasculitis becomes chronic, and a person may have to take medicine indefinitely to control his symptoms and reduce his risk of complications.

If you visit multiple doctors, make sure each one knows what the other members of your health-care team have done, especially if they have made changes to your treatment and medicines. Let each doctor know about all treatments and medicines you’re taking, even if you don’t think it is “his” condition.

Living with a chronic condition is not easy and can cause anxiety, fear, and depression. Talk with your health-care team and others you can trust about how your condition is affecting you emotionally. Your doctor may be able to adjust your medicines to improve your quality of life and may also be able to recommend a therapist or other medical professional who can help.

You may also want to consider joining a support group for people with vasculitis. These groups can be especially helpful if you have been newly diagnosed because they let you see how other people have managed the same symptoms. Those who have had the condition for some time often take satisfaction in passing along what they have learned to others, and can provide valuable insight and strength.

Ask your doctor or contact a local medical center to find a group near you. You can also get in touch with the Vasculitis Foundation by calling their toll-free number, (800) 277-9474, or at www.vasculitisfoundation.org.

If you have vasculitis, the following tips may make coping with the condition easier.

■ Educate yourself about your condition. The more you know, the better you’ll be able to participate in the management of your condition.
■ Learn about your medicines, the purpose for taking them, and the side effects they may cause.
■ Be honest with yourself and others. Saying you’re “fine” when you’re really having an off day may keep you from getting the help and support you need.
■ Don’t hesitate to ask for help when necessary. See if friends or family members might be willing to pitch in with shopping, chores, or taking care of children. You might also want to investigate housecleaning services and/or options for getting groceries and other household items delivered.
■ It is normal to grieve the loss of your “old” self before you developed your condition, and it’s important to do that as part of coming to terms with your new reality. However, it’s also important to recognize that you are still you—a valuable individual whose needs are important and who can discover new ways of enjoying life, even with changed abilities.
■ Get moving. Getting out of bed and dressed can give you a better sense of well-being, and a bit of walking often helps to relieve pain.
■ Eat balanced, low-fat meals.
■ Try yoga or meditation to ease muscle tension and emotional stress.
■ Get enough sleep; this will help your body rejuvenate itself. It’s important to reduce your stress and anxiety because they may also cause fatigue.
■ Keep a journal of your symptoms, medicine doses, side effects, and feelings. It will come in handy each time you visit your doctor and help you take charge of your condition management.
■ Remember to have fun. Plan nights out with friends to get your mind off your condition.
■ Seek a support group to talk to others who have similar concerns. See what you can learn from their experiences.

Last Reviewed 12/31/15

Kurt Ullman has been a medical writer for 30 years. He is based in Indiana.

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