by Marcy Worthington, Charla Billick, Christine Kelly Kennedy and multiple contributions from members of the Polycythemia Vera Supportive Friends Support Group
When we have an appointment scheduled with our doctor (hopefully an MPN Specialist at some point) it is helpful to have a list of questions to be properly prepared. It also helps to know what to expect as far as PV Symptoms you may experience. Here is a checklist you can use and symptoms you may experience as a normal part of having PV.
- How often will I be getting CBC’s and seeing you?
- At what levels do you want to keep my HCT, HGB, WBC, platelets?
- Have you treated people who have PV with anything other than phlebotomies and aspirin or hydroxyurea?
- Are you open to using Pegasys, Peg Intron, and or traditional interferon?
- Would you consider using Jakafi, or a combination of Jakafi and Pegasys?
- Do you participate in trials?
- Will you order a BMB at some point? If so what will trigger it being done?
- Will you test me for JAK2 V617F variant, EXON 12 and new variants when discovered by researchers?
- If I am PV secondary what tests will you be preforming to find cause?
- Will you be willing to coordinate with an MPN expert if I consult with one?
- How do you treat the itching associated with PV?
- Fatigue – Top 10 Tips for Battling the Fatigue Associated with Myeloproliferative Neoplasms – Mayo Clinic, Dealing with MPN related anemia and fatigue
- Gout or uric acid – Gout symptoms
- Itching / dry skin – Might want to try the Z and Z combo for itching, more on itching – Polycythemia vera-associated pruritus and its management
- Brain fog and memory issues
- Long bone pain – Bone and joint pain in MPN explained
- Red face, flushing, hot flashes and night sweats (most common in patients with Myelofibrosis, can be present in PV and ET patients)
- Insomnia – PV patients have worst impairment of quality of life among patients with newly diagnosed MPNs.
- Migraines and headaches
- Hands and feet burning, red and tingling – What is erythromelalgia?
- Anxiety, irritability and depression
- IBS and GERD
- Ringing in the ears (Tinnitus) – Tinnitus explained
- Restless leg syndrome / cramping
- Sensitive to hot and cold
- Blood clots – Blood clots explained
- Chest pain
PV Reporter (David Wallace) was a contributor to The Good Hematologist published by MPNforum – click on the image below to read the article. This should be a helpful tie in with the information above.