Just found out that I have a blood disease,

hi, I found out I had polycythaemia Vera in October 2017.this was after having a stroke in September 2017 caused by reduced blood flow in the brain. the initial way of getting the blood countdown is to do venesection. After venesection they put you on hydroxycarbamide. for me it works quite well there are side effects for that varies from individual to individual. i hope this helps.

colin

Hi, Polycythemia Vera is one possible cause of elevated red blood counts, you could also possibly have just polycythemia (also called secondary polycythemia) where there is another cause of the high red cells, such as smoking, sleep apnea, high altitudes, etc. Your doctor will run some tests to verify which is the cause of the condition. If it is Polycythemia Vera it is a chronic condition but is treatable, so don't panic. Best wishes to you.

Hi JT, I am in the exact same predicament, literally. By that, I mean I was recently referred to internal medicine where a gene mutation test came back positive for the JAK 2 V617F mutation and low/normal EPO test so I am being referred on to hematologist. My hubby seems reluctant to discuss as well until we get the official diagnosis from the hemotolgist although internal medicine doc has already indicated it's all but confirmed. My appointment is also for next Tuesday, Feb 5th. I'm a 49 yo female. My most recent blood-work was WBC 13.3 range 4-11 (Neutrophils 9.1, range 2.0-7.5), RBC 5.15 range 4-5.10, Hemoglobin 167 range 120-160, Hematocrit .48 range .35-.45.Not sure where you're located, I'm in Ontario, Canada.I, like you, have been doing tons of research. There's also a really good FB group you can join (polycythemiaverasupport). My feelings are mostly anxiety as I am not entirely sure what to expect at the appointment, if she'll order a bone marrow biopsy or any other tests or give me an official diagnosis based on existing results including mutation positive. I also feel comfort however, knowing knowledge is power and there is a great deal of info out there. Check out a site called PV reporter as well. Knowing there are a lot worse things one could be diagnosed with and that PV can be managed for many years is also a comfort. Best of luck to you next week. Please let us know how you make out.

Hi there I am a 60year old male living near Manchester in the UK , iI was diagnosed with PRV in 2014 , for 4 years iI just had venesection, but since turning 60 I have been on Hydroxycarbamide, with no side effects at all, there is no need to worry about this disease as it is very maintainable, hope everything goes well for you x pele

Hi i was diagnosed May 2015 after random blood test My GP noticed my Hb was high. I had no definite symptoms. As long as you are under the care of a haematoligist, don't worry.

Hello there,

Lots of good advice already.

You say that your blood oxygen reading was low. Do you smoke? If you do, stopping is one of the best things you could do to improve your health. with immediate results.

hi i was diagnosed with PV in 2012 and the hemo did the usual by removing blood from there to taking hydro tablets , six months later ,my wife was diagnosed with the same problem , they tell you its a gene , dont belive it

@JT67058 Hello, just wondering how you made out today? Take care.

Hi ,

Here are some latest good news about the new generation first-line drug for PV patients:

The European Commission (EC) has approved Besremi®(ropeginterferon alfa-2b, P1101) as monotherapy in adults for the treatment of polycythaemia vera (02/19/2019). The European market authorization makes Besremi the first and only approved treatment for polycythemia vera (PV) presented at EHA 2017.

The following papers are for reference only:

1. Abstract EHA-3520: An update from the PEGINVERA study (NCT: 2010-018768-18) on long-term maintenance treatment of up to 6 years (median of 4 years) with Ropeginterferon alfa-2b was provided. Patients were successfully switched from the once every 2 weeks to the more convenient once every 4 weeks’ long-term maintenance dosing schedule after a median of approximately 2 years.

2 .Abstract EHA-3556: To alleviate the known burden of frequent health care office visits for product administration, home self-administration and patient individual dosing of Ropeginterferon alfa-2b were performed in the PEN-PV study (NCT: 2014-001356-31).

3. Abstract EHA-1564: To assess the disease modifying capability of Ropeginterferon alfa-2b compared to hydroxyurea (HU), the effect of treatment on hematopoietic bone marrow progenitor cells was investigated in 10 patients of the French PROUD-PV study population (NCT01949805).

In short, Besremi® is a novel, long-acting, mono-pegylated proline interferon with improved pharmacokinetic properties offering improved tolerability and convenience. Patients were successfully switched from the once every 2 weeks to the more convenient once every 4 weeks’ long-term maintenance dosing schedule after a median of approximately 2 years. The majority of patients showed a sustained reduction of the mutant JAK2V617F allelic burden to below 10%, demonstrating the disease modifying capability of Ropeginterferon alfa-2b treatment.

Conclusions:These data confirm a) the high and durable hematologic response and symptom improvement achieved with Ropeg, b) the excellent safety and tolerability profile of Ropeg, and c) the disease modification capability of Ropeg suggested by its ability to significantly reduce the mutant JAK2 allelic burden. Besremi® will provide a valuable and safe new long-term treatment option for PV patients.

I think the new generation interferon( Besremi®) may a good choice for a permanent cure !!

Best wishes