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Diseases > Granulomatosis with Polyangiitis (GPA) > What is it going to do to me?

What are the signs and symptoms of Granulomatosis with Polyangiitis?

Granulomatosis with polyangiitis often starts slowly. The symptoms of fevers, tiredness, aching muscles and weight loss can be confused with infection or even cancer. Most people with granulomatosis with polyangiitis initially seek treatment because of problems with their respiratory tract. Signs the airways are involved include the following:

  • Chronic (long-term) sinus problems
  • Frequent nose bleeds
  • Open sores in the nose and/or mouth
  • Ear infections or loss of hearing
  • Shortness of breath
  • Chronic cough
  • Coughing up blood
  • Lots of lung infections (pneumonia) that are not caused by an infection
  • Swollen trachea (windpipe) – although this is rare, it can be serious if it closes off

Less commonly, granulomatosis with polyangiitis affects the kidneys. Signs that the kidneys are involved include swelling of the legs, arms, or face due to fluid retention and frothy urine caused by protein in the urine.

Some people with granulomatosis with polyangiitis have joint or muscle aches and pains, a skin rash, or inflammation of the eyes (uveitis or iritis). More rarely, a person with granulomatosis with polyangiitis might suddenly have a nerve problem that causes a sudden loss of strength (i.e. foot drop). Inflammation of the tissue around the heart (called “pericarditis”) may also occur, but this is very rare.

One thing to remember about granulomatosis with polyangiitis and other types of inflammatory arthritis is that chronic (long-term) inflammation is not good for the body. People with chronic inflammation have a higher chance of developing heart disease. So if you have granulomatosis with polyangiitis, make sure you do everything you can to reduce your risk of heart disease. The first thing you should do is to make sure your granulomatosis with polyangiitis is treated. Other things include keeping your blood pressure and cholesterol at healthy levels. If you have diabetes, keep your blood sugar under control. And if you are a smoker, quitting can be one of the best things you can do for your overall health.

Work and Granulomatosis with Polyangiitis

The fatigue caused by granulomatosis with polyangiitis can sometimes limit people’s normal activities, including work. But there are things you can do to lessen the impact of Wegener’s granulomatosis on your work and daily routine. People with granulomatosis with polyangiitis often have to learn to balance their activities with the need to rest and conserve energy. Try to keep your stress levels and daily activities balanced, and avoid too many “ups and downs.”

In cases where granulomatosis with polyangiitis is severe, hospitalization might be required to initially gain control of symptoms. This will interfere with your work.

Travel and Granulomatosis with Polyangiitis

Although traveling is still possible when you have granulomatosis with polyangiitis, don’t forget that it’s a very serious illness. Before going on any trip, always check with your doctor. Make sure you have proper medical insurance. See our travel check list for tips on how to be organized prior to your trip to ensure a smooth, comfortable, and enjoyable time.

Sex and Granulomatosis with Polyangiitis

Although granulomatosis with polyangiitis does not particularly cause a loss of sex drive, it can cause fatigue and emotional hardships. These hardships can create barriers to sexual needs, ability and satisfaction. Take comfort knowing that sex and intimacy can be maintained in people with granulomatosis with polyangiitis … it can even draw partners closer together, especially through improved communication between mates.

For more information on intimacy, a great book is Rheumatoid Arthritis: Plan to Win by Sheryl Koehn, Taysha Palmer and John Esdaile. Many of the tips in this book can also be applied to people with granulomatosis with polyangiitis.

Pregnancy and Granulomatosis with Polyangiitis

Granulomatosis with polyangiitis does not affect your ability to become pregnant. However, some medications used to treat granulomatosis with polyangiitis should not be taken when trying to get pregnant or while breastfeeding. If you have granulomatosis with polyangiitis and want to get pregnant it is very important to discuss this first with your doctor. Your doctor can help come up with a safe plan to control your granulomatosis with polyangiitis while you try to get pregnant, during your pregnancy and during breastfeeding.

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