In july After 4 blood tests showing high red and white blood cells i was referred to Haemotologist who confirmed my bloods showed polycythaemia i had more blood tests including the one for the jak2 gene also had abdominal ultrasound. I was also told to stop smoking, which i did. Fast forward to mid October i went back to Haemotologist for results bloods still the same as before , ultrasound fine but the jak2 test had gone missing so all bloods taken again. Got the results for bloods other than the jak2 one from Haemotologist today (via my GP) and my results have drastically improved showing no signs of polycythaemia (results were actually better than bloods done 6 years ago). Can just having stopped smoking cause this difference in the results? Can someone explain? GP doesn't seem to know much about polycythaemia and i don't go back to Haemotologist until December?
Hi Moira, this makes perfect sense as you likely had secondary polycythemia, which is an increase in red blood counts due to external causes like smoking, sleep apnea, high altitudes, etc. Secondard polycythemia is not a chronic condition and can be resolved when the cause of the increased blood cells is identified and fixed. Polycythemia Vera (PV), or primary polycythemia, is not caused by smoking, diet, etc. but is usually caused by a generic mutation in the bone marrow cells which cause overproduction of red cells along with white cells. PV is not curable and is treated with removal of blood (phlebotomy), low-dose aspirin, and some prescribed meds like Hydroxyurea, ruxolitinib, pegylated interferon. Those with PV can only manage the condition, although there are some cases of remission with interferon. So you are lucky to have had secondard polycythemia and been able to fix it by stopping smoking! Best regards for continued good health. Bill
Thanks for your response Bill. It was just because the gp couldn't give me much information and i was also a bit worried as my aunt has PRV
PRV?
I think she means "Polycythemia Rubra Vera" which we now mostly refer to as just polycythemia vera or PV.
As bill said
Actually no. It polycythaemia Rosa Vera. Whether it's the same thing as rubra I'm not sure
Never heard of Polycythemia Rosa Vera and a google search comes up empty.
There are images for it on google but i think it's the same thing
Hi Moira,
PRV means Polycythaemia Rubra Vera. It is not greatly different to the basic PV but caused by some different but not dissimilar causes. Secondary Polycythaemia is a true increase in the number of red cells in the absence of the characteristic features of a myeloma proliferative disorder (MPN) and which has an identifiable cause. There are many possible causes but mainly either a reduction in the oxygen content of the blood which lead to an increasing red cell production by the bone marrow, abnormally high levels of erythropoietin (produced in kidneys) or if this level is normal then perhaps an increased red cell mass which may be called Absolute Polycythaemia. There is also an increase typified as Idiopathic erythrocytosis. An excess of red cells in Secondary PV where the bone marrow is induced to produce more red cells is called hypoxic secondary PV which can be caused by smoking. There are other factors but there is no need to amplify these but idiopathic erythrocytosis describes an increase in the red cell mass without evidence for a diagnosis. It might just be that you need further tests to exclude a hidden diagnosis of PRV. Basically you need to have a confirmed diagnosis of PRV or secondary PV before any treatment will be effected so would suggest you await further blood tests results from your haematologist and be guided by what is said. If your medic says you don't test for PV after all this then it must be considered good news. Hope you can ingest this. Good luck.
Peter.
My bloods have come back normal now. I cant believe that smoking was causing these abnormal blood results. My gp now says there is no sign of polycythaemia
Hi Moira,
Polycythaemia is not generally qualified as an hereditary condition but in medics anything could be possible.
Neither is it deemed transferrable,
.Peter.
Hi Moira,
Sounds good to me. Hope it stays that way for you. Good luck.
Peter.
Thanx. Maybe i can stop worrying now
Hi Moira,
You may use the website as a source of latest information of PV:
59th Annual Meeting and Exposition (December 9-12, 2017)
Number: 320
Ropeginterferon Alfa-2b Induces High Rates of Clinical, Hematological and Molecular Responses in Polycythemia Vera: Two-Year Results from the First Prospective Randomized Controlled Trial
Ropeginterferon Alfa-2b is expected to be the first interferon approved for PV and the only EMA approved first-line treatment for Polycythemia Vera (PV) possibly next year.
I think the new generation interferon(P1101) may a good choice for a effect and permanent cure !!
Best wishes
Thank u for all your information.bi have today received a letter from my Haemotologist advising that my JAK2 test and EPO were both negative and it seems to have been secondary polycythaemia which has cleared because of stopping smoking. I still have to get intermittent blood tests. Good luck and health to you all
Hi moira: No, results don't usually change. However, maybe your blood was mixed up with someone else's. I had that happen only one time. Next time you go back, let's hope your blood is normal, and that the first test was wrong or mixed up with another person's. I will pray it is normal.
harrishill
Thanx for reassuring me.
Hi Moria,
Approximately 95% of all PV patients have a mutation of the JAK2 gene in their blood-forming cells.
It is important to double-check your results with your blood test!
Best wishes
But since stopping smoking brought down your blood counts, it is most likely that you had secondary polycythemia, which can be fixed by finding and removing the cause, which in your case was smoking.