Cause of Secondary PV

[Green1445]

I was recently diagnosed with secondary PV. Although I quit cigarettes 10 years ago, I have continued to smoke marijuana for pain management. Would this be enough for cause?

[Mostew]

If it was I think an AWFUL lot of people would be diagnosed !!!!

I would think it’s less harmful generally than strong pain killers which can have severe side effects when taken long term .

[paradiastole]

If it's secondary, it isn't PV. Secondary polycythaemia can have a number of causes including smoking, COPD, kidney disease and others.

[Green1445 in reply to paradiastole]

I do have COPD (sorry I forgot to mention that was why I had to quit cigs).

[hunter5582]

My understanding it would only be secondary if there was a diagnosed cause. If there is no identified cause, then it could be called idiopathic erythrocytosis.

ncbi.nlm.nih.gov/pmc/articl... .

Note: there are about 5% of Polycythemia Vera cases that are not JAK2 positive. There is a VERY small number of PV cases with CALR (extremely rare) reported. There are some diagnosed with PV with no identified mutation. There are some other mutations under investigation. Perhaps there will be more known in the future.

It is a relevant issue in my family. I have JAK2 positive PV (used to be ET). My daughter has a JAK2 positive ET, but looks to be moving towards PV. My son has idiopathic erythrocytosis. Hopefully we will understand the familial MPNs better, which is why we are participating in a study on this topic.

All the best to you.

[Green1445 in reply to hunter5582]

Thank you.