Scared that I have PV..

Hi angela thanks for answering. I want to know Is the tratement for secundary polycythemia the same like in the primary polycythemia?

Thanks again..

All the best

I have the jak2 genetic mutation so I have primary polycythaemia. I take a baby aspirin every day and am now having venesections about once every four or five months. I started out having them every two weeks, then every month, then every two months.

I cannot say what the long term treatment for secondary polycythaemia would be as there would be an underlying cause for it, not a genetic mutation. So the disease that caused it would need attention too. But I imagine, initially, that baby aspirin and venesection would be used to reduce the risks of having blood that is too thick. Though that is only a guess. What has your doctor said to you?

Thanks again Angela I really appreciate it.

My doc isn't sure yet what it is..he first thought that is PV but when he saw that the jak2 is negative he told me to do some others examination but Im still waiting for the results he is a little bit surprised cuz of my age im 23 years old he cant belive that in these age i can have PV.

I wish you all the best

Gretings from Albania

Maybe you don't have pv. but my niece got it at a young age because she had an accident.

She stayed in a holiday apartment which had a broken gas boiler and she was poisoned with carbon monoxide. Her doctor diagnosed secondary pv. She is still getting treatment for it after many years but is healthy and happy.

Anything which deprives your body of oxygen can give you secondary pv. Drowning? Well, not total drowning obviously!

Asthma?

Sleep apnea? (Don't know how to spell that word)

As julia says, there is another test for another genetic mutation, the exon 12, and maybe your doctor should do that test next.

Don't worry, even if you do find out that you have pv it can be managed and you will be fine.

 

Hi Anna, I am jak2 negative and have primary polycythemia, rare but can happen. I was diagnosed about 10 months ago and have regular venesections. I'm a 47 year old female and was pretty freaked out at first but do not stress. Even if you do have it it's not the end of the world. Def raise with your doctor. All the best. Xx

Sarah, what was your initial process of diagnosis? I'm jak2- but I'm without a diagnosis, I'm planning to see a MPN specialist after my April blood test. X

Hi Julia, months of blood tests. All the usual high rbc and high hematocrit, low epo. Crazy blood pressure. Have to have a bone marrow biopsy soon.

Hi Zap thanks for replying

Yeah my hematocrit is high and thats terrify me.

To be honest these was the first time that I heard about PV. I've readed that PV mostly appear at people whos are 30 years and above and Im 23 years old. My doc. Isn't sure yet he told me to do some others examination but im still waiting for the results. can you tell me about secundary polycythemia it is curable? Thanks again Zap i know that you guys are not drs but your opinons really helps me.

All the best.

Gretings from Albania😉

Hi Anna I see that you sent me 2 posts but for some reason they are awaiting to be moderated.  So I can't see them.  I don't even understand what that means.  Zap

Hello zap,

The moderators are sort of like policemen who sit and watch what we put on the forum. There is a rule on this website which says that any link to another website has to be checked by them to make sure that it is OK.

It takes a few hours sometimes for them to approve it.

Hi ang well you've cleared that up for me.  I've seen it before and I thought maybe foul language or rude comments.  Who knew!  Zap

Hi Zap yes i sent to you 2 postes to thank you about your replaying and I dont know for what reasons the are aweating to me moderated. Thanks to angela that helped me too to understand..(sorry about my english that isn't so good)

All the best

Anna

Hi Anna I have primary Pv.  I don't know a lot about secondary other than its caused by an underlying disease such as copd.  I do know we were all scared when we got dx.  It's something none of us heard of till we got it. I'm sure someone on this line has secondary Pv and would be able to help you better than myself.  You might not even have it at all.  Good luck. Zap

Is secondary polycythaemia curable? Well, we don't know that you have secondary polycythaemia for sure but let's just imagine that you do have it.

So why do you have secondary polycythaemia? Because something else is wrong with your body. You have another disease which is causing the secondary polycythaemia. Imagine that you have bad eyesight but don't wear glasses - you get headaches. If you fix the bad eyesight by wearing glasses then the headaches disappear. Same thing with secondary polycythaemia. If you fix the disease then the polycythaemia disappears.

But as I said, we don't know for sure that you have polycythaemia.

Has your doctor suggested a scan of your spleen?

Thanks Angela you helped me a lot.. today I was to my hematologist and I've done the test for jak2 exon 12 till monday or tuesday I will have the results. Yes I did a scan of my spleen its in normal size.

Thanks again for your information

Thank you Zap

I really appreciate it that you are trying to give me more information

I wish you all the best😉