At MPN Voice patient forums, questions about itch, (pruritus) are probably one of the most common, and it’s well documented that itchy skin is a common symptom of myeloproliferative neoplasms (MPNs) in particular in polycythaemia vera (PV). Pruritus is defined as an unpleasant itching sensation that leads to intensive scratching and MPN patients often suffer…
Whenever possible, plan ahead with your haematologist and surgeon. Even if you have a myeloproliferative neoplasm (MPN) that is under good control and are doing well from day to day there may be an occasion where you may need an operation. Understandably, many people with MPNs feel concerned when facing surgery. Here are some tips…
These tips for reducing side effects have been compiled by MPN Specialist Nurses. If you take interferon If you take interferon and suffer from fatigue it can sometimes help to: Take more injections of a lower dose (e.g. 3 × 3 MU vs 2 × 4.5 MU) Change the time of your injection Switch brands…
For some patients diagnosed with myeloproliferative neoplasms (MPNs), going through the stages of illness, diagnosis, treatment and lifestyle adaptation, intimacy can slip off the radar. A psychologist from the US Mayo clinic offers these tips for renewing intimacy. It can be very difficult to raise concerns with your haematologist or GP about how illness affects…
Fatigue is a big challenge for many patients with myeloproliferative neoplasms (MPNs), perhaps the worst in patients with myelofibrosis (MF), but clearly it is present in many patients with essential thrombocythaemia (ET) and polycythaemia vera (PV) as well. Multiple things can contribute to this including the disease, medications that are used to treat the MPN…
People with myeloproliferative neoplasms (MPNs) can use several different techniques to manage the emotional impact of having a chronic illness. Take control with stress reduction and cognitive techniques. Reduce stress Techniques such as yoga and tai chi and meditation have proven to be effective at reducing stress and in some cases, pain, in several scientific…
Deep vein thrombosis (DVT) is the formation of a blood clot (thrombus) within a deep vein, predominantly in the legs. For patients with myeloproliferative neoplasms (MPNs) it is important to avoid the risk of DVTs wherever possible. Common signs and symptoms of DVT include pain or tenderness, swelling, warmth, redness or discolouration, and distention of…
Try these tips to communicate with the people in your life. It’s happened to all of us: We try to explain our myeloproliferative neoplasm (MPN) to family and friends and get a blank, confused look in response. Many people in our lives are unfamiliar with MPNs but excellent communication can help and in close relationships it’s…
Invisible/“Silent” diseases It can be very distressing for people diagnosed with a myeloproliferative neoplasm (MPN) to find that others are not sympathetic. When you and your haematologist look at your blood test results, it’s often clear that everything’s not quite right but other people in your life may not see or understand these changes. MPNs…
People with myeloproliferative neoplasms (MPNs) can find themselves coping with many stressors. For some patients, MPNs are chronic illnesses which can be life-threatening. If you are diagnosed with an MPN you may feel low in mood or fluctuate into and out of depression. The impact of loss Whilst some patients face less difficult situations, others…