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Find out more about self-care
This brochure outlines the journey of living with AAV; learn more about diagnosis, clinical visits and self management.
How can I manage my self-care needs?
It can be difficult to manage your daily AAV self-care needs and challenges. Staying organised and on top of these tasks can help improve your overall health and wellness.1
Self-care can involve requests from your doctor, as well as steps you need to take to manage your AAV between
visits.2–4
References and footnotes
How can goal setting help?
Many people with AAV find that setting goals helps them become a more active participant in their disease management by giving them short- or long-term targets to aim for.
Shanali - Vasculitis patient, rheumatologist - UK
Realistic goal setting
Realistic goal setting is important to avoid disappointment or frustration, and your doctors will be able to discuss which goals might be suitable for you, based on factors such as your disease, treatment, and personal, social or professional ambitions.
Shanali - Vasculitis patient, rheumatologist - UK
1. Yates M, et al. Ann Rheum Dis 2016;75(9):1583–94.
1. Yates M, et al. Ann Rheum Dis 2016;75(9):1583–94.
1. Clark NM, et al. J Aging Health 1991;3:3–27.
2. Gallant MP. Health Educ Behav 2003;30:170–95.
3. Thorpe TT, et al. Arthritis Rheum 2007;57(7):1296–302.
4. Yates M, et al. Ann Rheum Dis 2016;75(9):1583–94.
1. Thorpe TT, et al. Arthritis Rheum 2007;57(7):1296–302.
1. Yates M, et al. Ann Rheum Dis 2016;75(9):1583–94.
2. NHS (2020). Steroid injections. Available at: https://www.nhs.uk/conditions/steroid-injections/. Date accessed: December 2022.
General tips (when receiving treatment for AAV)
AAV treatments can have many side effects, so here are some tips designed to help your body be in the best condition possible when receiving treatment:2–4
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Minimise possible situations where infections may be more common, like nurseries, hospitals and airplanes. When you need to attend appointments in clinics or hospitals ensure you protect yourself with a face mask and disinfectant
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Try to decrease stress in your life by finding ways to relieve stress, like meditation or yoga
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If you smoke, try to stop (your doctor will be able to inform you if any services are available in your area)
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Make sure to keep within sensible alcohol limits. This would be no more than 3-4 units of alcohol per day for men, and no more than 2-3 for women. One or two days a week should be alcohol-free
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Make sure you stay up-to-date on your vaccinations, and discuss with your doctor what vaccines are suitable for you
Steroids
The steroids used to treat AAV are called glucocorticoids. They are given in a high dose at first and then gradually reduced if all is going well.1 They reduce inflammation and decrease the activity of the immune system through a few different mechanisms.3 You may receive steroids throughout your AAV treatment journey, including when you are in remission (the dose is lowered when the disease is not active) and during any periods of relapse.1
Steroids may be given as tablets or injections (only given by healthcare professionals).3,5
Tips when taking steroids2,3
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Take tablets in the morning with breakfast to reduce indigestion, heartburn and sleeping difficulties
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To reduce the risk of developing osteoporosis, eat foods containing calcium and vitamin D, regularly exercise and take bone strengthening drugs (your doctor might prescribe these for you)
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To maintain a healthy weight, keep up your activity levels and adopt a healthy diet
Rituximab
Rituximab is used to treat a variety of autoimmune disease and certain kinds of cancer. It works to lower the activity of the immune system by affecting the cells which make antibodies.6
Rituximab is used when the disease is active, and as maintenance treatment when the disease is in remission.1
Tips when taking rituximab7
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Your first infusion usually takes 4 to 6 hours so you should plan accordingly
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Take activities - infusions last several hours so take something to help pass the time, like a book
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Plan for your needs - for example, take a jumper to help you stay warm in case the room is chilly
Cyclophosphamide
Cyclophosphamide is used to treat a number of autoimmune conditions and cancers in different doses. However, the doses given to people with AAV will typically be lower than the ones given to treat cancer, so the side effects might be less severe.8,9
Cyclophosphamide works as an immunosuppressant, decreasing the function of various white blood cells. It is given as an infusion, injection or daily tablet.8,9 Once patients complete their course of cyclophosphamide or move onto maintenance treatment, they will usually be switched to rituximab (or occasionally methotrexate or azathioprine).1
Tips when taking cyclophosphamide8
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Take cyclophosphamide in the morning
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Prior, during or immediately after taking, drink plenty of fluids and go to the toilet regularly
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Avoid grapefruit and grapefruit juice, as they can reduce the effectiveness of cyclophosphamide
Methotrexate (off-label use)
Methotrexate is an immunosuppressant, often used to treat different cancers, neoplastic diseases and psoriasis.10
Methotrexate is not clinically indicated for use in GPA/MPA, but the EULAR 2022 recommendations suggest it can be used as an alternative to rituximab in remission induction and maintenance treatment.1,10
Mycophenolate mofetil (off-label use)
Mycophenolate mofetil reduces the activity of the immune system by targeting white blood cells.11 Mycophenolate mofetil is not clinically indicated for use in GPA/MPA, but the EULAR 2022 recommendations suggest it can be used as an alternative to rituximab in remission induction treatment.1,11
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In AAV, a specific protein in the body called a C5a receptor plays a key role in stimulating inflammation.12 Avacopan attaches to this receptor and prevents it from working, thereby reducing inflammation of blood vessels seen in these diseases.13
Avacopan is a prescription medicine used to treat adults with severe, active GPA or MPA. It is used together with other treatments prescribed by your doctor known as rituximab or cyclophosphamide.13
Things you should know when taking Avacopan13
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Avacopan needs to be taken twice a day, in the morning and evening with food. It may help to create a routine, for example taking it with breakfast and dinner
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Grapefruit and grapefruit juice are to be avoided as this can influence the effect of avacopan
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Inform your doctor whenever you start taking a new medicine
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Plasma exchange is a procedure where your blood is cleaned to remove the ANCAs and other inflammatory triggers.12 Plasma exchange is only recommended for consideration in patients with rapidly progressive glomerulonephritis (kidney inflammation).1
Tips when receiving plasma exchange14
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Drink plenty of fluids before the session
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Wear comfortable clothing
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Bring a book or something else to entertain you during the procedure
Azathioprine (off-label use)
Azathioprine is an immunosuppressant, used to treat many autoimmune conditions and in cases of organ transplant.15 Azathioprine is not clinically indicated for use in GPA/MPA, but the EULAR 2022 recommendations suggest it can be used as an alternative to rituximab in maintenance treatment.1,15
Explore more tips on feeling
in control of AAV
UK-NP-2500093 / Date of preparation: February 2026 © 2026 Vifor Fresenius Medical Care Renal Pharma