Diagnosed polycythemia vera at 26: Any young PV patients out there?

Some patient forums have young patient forums. You might find good support there. I wish you the best and remember, you are the patient and in charge of your healthcare. Sometimes hematologists do not give the support we would like regarding symptom management. The forums can help you under stand symptoms, side effects of treatment and possible remedies. Also, the overwhelming advice you will get is to find an MPN specialist. If none bear your, you might be able to establish a contact with one through remote visits. The specialists partner with the local hematologist to provide care. This is a rare disease and sometimes hematologists are not up to speed on latest treatments. I would advise you to push for bone marrow biopsy and comprehensive genetic analysis if you can afford it.

@eloise999 Why would you push her to go for a bone marrow biopsy? She stated that she can’t afford the current methods and that she is afraid of needles. If she tests Positive for the JAK2 gene she can be diagnosed soley by that and her labs. Her treatment will be the same. She needs some
Moral support and I hope she can find someone her age to help or she can get it here from us. I’m 59 and diagnosed with PV three years ago. She can ask me anything and I will be honest. If her doctor has any bigger concerns and wants to do the bone marrow test, then she can discuss it, but she needs to know that her treatment will be the same for PV with or without it.

@eloise999 Hi! Thank you for your advice. I am very fortunate in that I am already getting excellent care from a reputable doctor in the field. At this moment a bone marrow biopsy has been discussed but not scheduled yet. It will most likely be scheduled in January at my next appointment.

@nypara66 Hi! Thank you for your advice. Unfortunately I did not test positive for Jak2 so I am going to have to get a biopsy, I go back in January to schedule that and check my RBC levels again 🙁 I honestly think the biopsy is going to be the worst part, did you have one? Ive read online that its short and painful , but not unbearable. Im getting used to giving blood. I used to pass out at the sight of needles but after having to give blood 4 times in 3 months I've become a pro. Thank you so much again.

@chorusgirl500 so far my insurance has covered everything but a 60 $ copay. However, I doubt that is going to last. The total cost without insurance right now would have been 3000 $ , which is about what i am paid in a month. It isnt even about the money , as much as I'm realizing in order to stay alive im going to lose the opportunity to do all the other things I want to do that require money. Ill never go to another country or see the Northern Lights. I have a therapist I have been talking to, but I've been working with her for years and how to help someone who might die is really out of her wheelhouse.

Really understand d that being diagnosed so young is scary
Please don’t think that you are going to die. There are multiple meds that can control your OV. Mine is hydroxyurea and I needed only two phlebotomies when I was first diagnosed
After that only the hydroxyurea
(8 years, so far) has kept my numbers stable. I’m old, and I
haven’t lost energy. My Hemotologist sees me and does bloodwork every three months
Sending you positive thoughts and prayers.

@chorusgirl500 My Jak2 was positive and my doctor and I decided together that the bone biopsy would not be needed and my treatment, Hydroxyurea and phlebotomies would be the same no matter what the results of a biopsy said. Being JAk2 negative is really a good thing! You may have an underlying condition and can be treated.PV Primary is with JAK2 + PV secondary means something else could be causing it and sometimes it can be resolved! Did they say they believe it is PV? Have you been traveling in High Altitudes? It can raise all your blood levels and mimic PV labs. Your ins is much better than mine. I have a high annual ded. And then I pay 20% of all costs. I was never sick and always healthy so I get it. You are so young and will get it all figured out. Please keep us all posted and if you have any questions, just ask.

I have not traveled in any high altitudes. He said based on my lab results that he is almost certain I have PV , as nothing else he knows of would cause my combination of results and that I may be one of the small percent that have it without the mutation.

@nypara66 I've never smoked or drank , he said that could've been a secondary cause. We did a sleep study for sleep apnea which was negative. So that is why he wants the biopsy. I suppose I have officially stumped him. He did say in a small.percentage of PV with no Jak 2 mutation they never find out why you have it, they just treat it the same none the less. I will absolutely keep everyone updated. Right now I am working on telling my family what is going on without scaring them, and talking to my job in case I have to miss time for appointments or procedures. Its just all very overwhelming. Thank you so much again.

@irishnanny3 thank you very much. I was told the outlook was 14 to 20 years with treatment but I have been told given my age and early detectiction I will live a normal life as long as I complete my treatments. I am praying this is the case. Thank you again