Experiences with

Polycythaemia

Hello, I appreciate there is probably not a definitive answer to my question but I was wondering if there could be a link between platelet donation and subsequent PV diagnosis. I gave platelets some years ago and on one occasion when I gave blood, I was told there was an anomaly and to get a blood

My query is how can the iron deficiency be treated with a diagnosis of Vera when iron supplements are contra indicated.

All other variables are the same except I take Ruxolitinib for polycythaemia which increases cholesterol but the dose increase this summer ie between the two tests was only only 6%. has anyone any data on how much thyroid change changes cholesterol.

He has Polycythaemia Vera He has coped really well with Rux but has had to come off owing to large amount of skin cancers over past 12months. Pruritus has been a big issue but Rux really was the answer.

I have been on Healthunblocked site in the section for MPN (Polycythaemia) and Thyroid for many years and I am pretty knowledgeable medically as I have Polycythaemia Vera and Hypogonadism although I consult the experts I make my own decisions on treatment etc.

It provides, on page 53: “Grouped application consisting of: Extension of indication to include treatment of Polycythaemia Vera (PV) and Essential thrombocytopenia (ET) for PEGASYS, based on published data of clinical studies conducted in support of the efficacy and safety of Pegasys for the treatment

My operation was cancelled for a few reasonsand because of Polycythaemia . The Dr wanted to use Tranexamic Acid to reduce bleeding. Does any one know if this can be used with polycythaemia . Thankyou .

someone forwarded me information on the above subject. Pegasys is mostly used off label for MPN, but it is prescribed and reimbursed for MPN in many countries. What would be the motivation for Pharma& to start this procedure in this stage? And has the application been accepted, or is there information

Polycythaemia Vera can be an extremely debilitating illness that has a significant impact on patients’ lives in terms of day-to-day symptoms and affects not only patients but also their families and carers.

With my blood pressure increasing and meds on the horizon, I’m trying to research the subject of the best blood pressure medications for those with polycythaemia vera.

This ‘virtual’ forum focussed on Polycythaemia Vera (PV) and features talks from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Anna Godfrey, Cambridge University Hospitals NHS FT; Prof Mary Frances McMullin, Queen’s University Belfast and Dr Rebecca Frewin, Gloucestershire Hospitals NHS FT, and

has anyone with polycythaemia Vera had their severe anaemia treated

had peg inf 180 micrograms, then they put me on busulfan which seemed to work , I then became neutropenic so was taken of all medication, bloods took a long time to return to normal range with platelets not going over 160 , I haven't been on any medication for 7months ,My question is, my diagnosis polycythaemia

It is second hand experience as it is my mother who suffers with Polycythaemia vera (PV). She is 86 and is taking Hydroxycarbamide for PV (amongst other medications).

Third generation pegylated IFNα, ropeginterferon alfa-2b (ropegIFN; Besremi), was recommended by the European Medicine Authority (EMA) for treatment of Polycythaemia Vera (PV) following a Phase III trial (PROUD-PV / CONTINUATION-PV).

I tested positive on 17 December 2022 and still showing positive after further test on 23 December. Has anyone with PV fell to CoVid and how long did it take to clear?

What is the difference between an MPN Specialist and a Haematologist and how do I know the difference between the two, also does anyone have a rash with Polycythaemia. It is not the Hydroxy because I was diagnosed with PV and Purities' before I started on Hydroxy.

Hi everyone, I am a 66 year old man and have suffered with polycythaemia vera for the past 7 years. Over the last year my bloods have been up and down and not very stable. Before Christmas it was suggested that I have a bone marrow biopsy and have just received the results.

Hi,I suffer from polycythaemia vera and have done so for the last 7 years. I am on hydroxycarbamide, which they have kept increasing the dosage, but it is failing to keep my platelet levels etc in check.

I have Polycythaemia Vera and take Hydroxycarbamide always suffer from tummy problems before travelling on any form of transport . Sometimes a need to go to loo mainly to poo and at times force myself to go.