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

@chorusgirl500 a PV diagnosis without finding the JAK mutation is very unusual. I think something like 95% of PV patients have that mutation. So I can understand why the other commenter wondered why I recommended a biopsy if you had a PV diagnosis. Even with a PV diagnosis and JAK mutation you and your doctor can learn a lot from a bone marrow biopsy and broad genetic analysis. So I am glad to hear you are going for it. The biopsy and genetic analysis is helpful as a baseline for comparison for future years. The procedure is pretty quick, I would ask for the local anesthetic and I got something for anxiety which I was grateful for. I am a triple negative ET patient. There is a kind of continuum between these MPN diseases and patients do not always neatly fit into one category. It is good to know all you can. I wish you all of the best in seeking your diagnosis and care. Remember, most people live long and good lives with these diseases. Take care and try not to let it take over your life.

@loribmt Hi, thank you for your notes. We have already ruled out many of those secondary causes. I have been tested for sleep apnea. I do not have any lung concerns. I have never smoked or been around smokers or used drugs of any kind because my family has a history of addiction, I do not even drink. I live in florida which has no high altitudes and all my labs are coming back normal except for my RBC, WBC , Alk Phos , gran#, ANC, reticulotes, and erythropoietin, which is what is leading him to believe it is polycethemia in one form or another. Given my regular labs otherwise and my age there is no reason he suspects my kidneys and liver are not working exactly as they should. I was anorexic as a teen but was given a clean bill of health when I entered adulthood at a normal weight. I do struggle with hypothyroidism and have been in the process of losing weight ( no supplements , no medications just me and a nutritionist working with my thyroid and the gym) but he said this wouldnt have the kind of impact hes seeing, and my levels have been steadily rising for 4 years now ( I put off seeing the hematologist for financial reasons). Right now he does not currently see any cause. He did say that in about 30% of cases of Secondary PV the cause is never known. I have gotten genetic testing for the following , all of which has been negative, JAK2 V617, CALR, MPL and
JAK2 EXONS 12-15 and I am getting more labs done in January before he orders the biopsy. We needed another data point before my insurance would say the biopsy was essential to diagnosis.

@loribmt also 13 bone marrow biopsies? You are incredible, im getting ready to throw in the towel at 1. I will absolutely ask about sedation options, I just have to find out if my insurance will deem sedation medically necessary or if they'll only cover an anesthetic.:/

@chorusgirl500 LOL. Let’s just say the biopsies weren’t ever on the top of my list of fun things to do…but they were vital to my diagnosis and follow-up to treatments!
I really will admit I prefer sedation but would do it with just the local anesthetic if I had to. However, with sedation I got to wake up to Lorna Doone cookies and juice! Like dangling a carrot in front of my nose!! Yes please. LOL.
Good luck with that insurance…I just wrote in another reply to you about wishing we didn’t have to jump through hoops like a circus act to get approval for some of our vital tests!

@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 My 18 year old son just went through several rounds of CBCs until one came out normal . This started two years ago. The Jak2 test was negative. Because he has had a normal CBC and negative Jak2 , the hematologist said he did not have PV. He blamed it on the lab. I sure hope he is correct. He also said probably sleep apnea that lowers O2 and causes the body to make too many red blood cells is also a possibility. From what we were told, if he was positive, he could live a normal life.

@loribmt Hi, thank you for your notes. We have already ruled out many of those secondary causes. I have been tested for sleep apnea. I do not have any lung concerns. I have never smoked or been around smokers or used drugs of any kind because my family has a history of addiction, I do not even drink. I live in florida which has no high altitudes and all my labs are coming back normal except for my RBC, WBC , Alk Phos , gran#, ANC, reticulotes, and erythropoietin, which is what is leading him to believe it is polycethemia in one form or another. Given my regular labs otherwise and my age there is no reason he suspects my kidneys and liver are not working exactly as they should. I was anorexic as a teen but was given a clean bill of health when I entered adulthood at a normal weight. I do struggle with hypothyroidism and have been in the process of losing weight ( no supplements , no medications just me and a nutritionist working with my thyroid and the gym) but he said this wouldnt have the kind of impact hes seeing, and my levels have been steadily rising for 4 years now ( I put off seeing the hematologist for financial reasons). Right now he does not currently see any cause. He did say that in about 30% of cases of Secondary PV the cause is never known. I have gotten genetic testing for the following , all of which has been negative, JAK2 V617, CALR, MPL and
JAK2 EXONS 12-15 and I am getting more labs done in January before he orders the biopsy. We needed another data point before my insurance would say the biopsy was essential to diagnosis.

@chorusgirl500 Hi me again lol, Is your Hematocrit and hemoglobin high? I didn’t see you mention that. Also if your platelets are normal that’s great news because only some of us get high platelets like myself. I hope you can forget for a few days and enjoy the holidays!