Practical tips for managing PV

Disclaimer: the guidance provided in this section does not constitute nor replace medical advice. Please speak to your doctor about any lifestyle changes that may be appropriate for you.

People with PV need to be monitored on a regular basis so it is important to attend appointments and to follow medical advice. However, people living with PV can do more to manage their condition more effectively. Taking an active role in their own management will help them to remain as healthy as possible.

The following tips can be helpful for people living with PV.

+ Become an expert on PV

• Learn as much as possible about PV and how it is best managed.
• Ensure that you have direct contact details for doctors involved in your care so that you can discuss any concerns or ask questions between appointments.
• Keep copies of your blood counts and test results together in a safe place.
• If you develop new symptoms, be sure to talk to your healthcare team.
• Some people with PV are at increased risk of developing blood clots. If you fall into this category, make sure you know the signs of a potential blood clot and seek urgent medical help if you are concerned.
• If you are at increased risk of developing blood clots, it is important to reduce the risk of heart disease or stroke. Make sure your blood pressure and cholesterol are tested regularly and if you suffer from diabetes, make sure it is well controlled. Your physician can offer information on ways to reduce the risk of developing blood clots.
• Patient groups are an excellent source of up-to-date information and valuable support – particularly in terms of coping with symptoms such as itchy skin or fatigue.

+ Preparing for surgery

• At some stage you may need to have surgery (including dental procedures) and it is important to ensure that all healthcare professionals are fully aware of your condition as you may be at greater risk of blood clots (thrombosis) or may experience excessive bleeding or other blood clotting problems.
• Make sure your doctor of dentist is aware if you are taking anticoagulant (blood thinning) drugs because of the risk of increased bleeding following a procedure. You will usually be given an alert card to carry at all times so that healthcare professionals are aware that you are taking this drug.

+ Positive lifestyle choices

• Everyone, including people with PV, will benefit from eating a varied, healthy diet.
• Try to keep as active as possible. Ask your healthcare team if you should avoid specific types of exercise to reduce the risk of bleeding. Walking, swimming or yoga may be suitable forms of low impact exercise.
• Try to maintain a healthy weight.
• As is the case for all people, and especially those with a long-term condition, you are strongly advised to avoid smoking.
• Keep alcohol consumption to a minimum, as alcohol has a direct negative impact on the production of blood cells.

+ Coping with fatigue

• Extreme tiredness is a common symptom of PV and may be a particular problem after venesection.
• Pace yourself: if you know you have a busy day coming up, allow time for rest before and after. Try and identify which activities you find particularly draining and limit these as much as possible.
• Don’t commit to too many activities. Prioritise what needs to be done and focus on what you enjoy doing.
• Try to take regular exercise if at all possible. It can help to maintain fitness and relieve fatigue.
• If possible, ‘swap’ chores with other family members, allowing them to take on physically demanding ones.
• Make sure those around you understand that physical and mental fatigue is a symptom of PV and that your energy levels may vary from day to day.
• Be honest with others about how you are feeling, particularly if you are finding it hard to cope. Ask for and accept help if you need it. Be specific about what you need.
• Try and build in some ‘down time’ every day when you have time to yourself to rest and recover.

+ Coping with itching

• It is not known exactly why people with PV suffer from itchy skin. It may be linked to an increased number of mast cells, which are involved in the immune system’s allergic response.
• Ask your doctor for advice. They may be able to prescribe treatments such as antihistamines or UV light therapy.
• Keep skin well moisturised at all times. Use a fragrance- and alcohol-free formulation or an emollient designed specifically for dry, sensitive skin.
• Wear soft, natural fabrics with no scratchy seams.
• Contact with water is often a trigger for itching. Avoid hot showers or baths or keep them to a minimum. Use gentle unscented soaps and apply a moisturiser immediately after bathing.
• Drink plenty of water.
• Avoid overheating in bed – use light layers of soft bedding washed in low-allergy liquid detergent.

+ Avoid iron supplements

• Regular venesection/ phlebotomy can lead to iron deficiency, but it is essential that you speak to your hematologist before taking any iron supplements.
• Even low doses of iron supplements can cause significant increases in number of red blood cells, which people with PV need to avoid.

+ Join a patient organization

• Patient groups are an excellent source of up-to-date information and valuable support.
• Organizations such as MPN Voice (www.mpnvoice.org.uk), the MPN Research foundation (www.mpnreearchfoundation.org) and MPN Advocacy and Education International (mpnadvocacy.com) have information on MPNs in general and specifically on PV.
• Information includes tips on coping with symptoms and on specific treatments.
• Further international organizations can be found at: mpnadvocacy.com/mpn-support-groups

Further reading >

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