diagnosed with PV just after my 33rd birthday earlier this year in January. Still getting my head around it. Married father of a 2 year old daughter and another bub on the way. Trying to seek as much info from others with similar situation. I’m Australian.
currently doing venesections monthly. I don’t have the JAK2 mutation but have other symptoms such as enlarged spleen, gout, major fatigue (asleep at 8pm most nights) sore legs from knees down very often. Looking forward to speaking with others about PV.
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Aussiesam
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Hi there, I'm glad I'm in my 5th year with the pv diagnosis, the first year is definitely the worst, the haematologist can sound very blasé saying you'll live to a long life and probably die of something else, you know just take this tablet have a venesection it just rolls of the tongue. But for you it's doesn't come close to reassure. This is something you've never heard of before and it's difficult to share with family and friends. I hope your symptoms improve as the months roll by. All the best.
You have come to the right forum. Amazing, supportive people, some of who have a pure wealth of knowledge and always here with support and a response.
I am 53 years old, diagnosed with PV in 2022 and it is a shock to the system, so much info to navigate.
One of the things I hold onto is how far research has come in the last 10 years, whats yet to come could be amazing for us.
I suggest keeping track of discussions on this forum, keep tight records of your consultant outcomes, symptom calendar and ask anything you are unsure of on here.
You certainly have to project manage your health from here on out. Do not be afraid to stand up for yourself if you feel you are not getting answers or the care you expect
This is my first post here, but have been lurking for some time. I’m a 32-year old male living in a Scandinavian country. I was diagnosed with PV in march last year. I have a 4-year old with a ton of energy.
The hardest part for me - by far - has been the mental aspect. Suddenly dealing with a serious chronic disease is frightening and takes a lot of time to wrap one’s head around. But it gets better! Besides taking my meds I sometimes forget that I have the disease.
I follow the latest research and I’m personally sure that there will be a cure - or at least some medication that will stop progression - in the future. There’s just so much research going on.
I think a good relationship with a haematologist is important. Stay on top of your numbers. Consider medication. I’ve personally seen compelling evidence based on research to take interferon. New research recently mentioned on here also suggest Ruxolitinib/Jakafi can have a good long term effect on PV. Something to consider with your treatment team.
The most important advice I’ve been giving is to continue living. I live a very active life with a busy job, I exercise, I go out partying with my friends and mostly I do a lot of fun activities with my daughter.
I am 26 diagnosed in December when I was 25 and definitely still not completely over the mental aspect of it & still pretty worried about the future / progression. Like you said, good research so far on the meds being offered and hopefully one day a cure. I am currently doing phlebotomy and aspirin
I have been doing great in the sense that I haven’t had any side effects. But it has taken a long long time to work, and it’s still not controlling numbers a 100 percent yet, which is why the dosage was increased to 180 mg lately.
Hello and welcome. Glad you found your way here. This is a great place to get information and support.
I was diagnosed with a MPN about 31 years ago. It was originally ET but progressed to PV about 9 years ago. I have lived a great life and at age 67 continue to do so. I am the father of 2 and the grandfather of 1. There are important things to learn about managing PV, most importantly that it can be successfully managed.
One of the most important things is to consult with a MPN Specialist. PV is a rare disorder. Most doctors, including hematologists, have little experience with them. It sounds like you may have a particularly rare form of PV being JAK2 negative. This makes expert consultation all the more important.
I have tried several approaches to managing PV. I am hydroxyurea intolerant and it was ineffective. Venesections worked for a while, but in the long-term the adverse effects of venesection-induced iron deficiency were worse than the PV symptoms. I experienced fatigue, loss of concentration, alopecia, and reactive thrombocytosis. I have done much better on the interferons, Pegasys then Besremi. The IFNs have been more effective and much easier to tolerate than the other treatment options. My quality of life has improved as a result.
We are all different in how out MPN presents and what will work best to manage it. that is why individualized care guided by a MPN Specialist is so important. Here is a list of MPN expert docs. mpnforum.com/list-hem./
I have ET and was diagnosed at age 60. It took years for me to find a way of living with it.
Being diagnosed so young and having venesections must be horrid and time consuming.
All I can say is think about how you can make life easier. If your’ ve flower beds lawn them. Think years ahead, you might want to /need to retire a lot earlier than you planned. Do any thing and everything to get the most out of life with minimal effort.
Keep your energy for your family and fun things in life.
I was diagnosed with ET Jak2+ 6 years ago and take hydroxy. Yes I get tired , itchy, night sweats , have to keep out of the sun and drink plenty of water. My answer is to live life to the full and be grateful you have something that can be controlled. There are all sorts of problems in life which have to be faced but at the moment research the illness understand it and get on with it. Before I was diagnosed I had loads of aural migraines which have now mainly stopped. I’m grateful ET was picked up in a random blood test.I’m 80 play golf and have not had an easy life and take 12 x 500mg per week.
A shock at first yes but there are worse things to have if you live in the day
wow a low dose!Brilliant. I hope it continues. Yes I try and do the same. After diagnosis I thought blow it. My husband isn’t a fan of Spain so I went with a friend for 3 weeks around Spain on a train. It was amazing! So much history.
You have come to the best site. I have a 4 year old. I was diagnosed at 38, have had PV for 3.5 years. I work, go on vacations, exercise, let’s just say my life is busy! I have had other issues in the last year but I keep going. I feel like if you wake up and feel good then just live your life. I will say it has changed my life in and I will not wait. If I want something I get it or do it. 4 Vacations planned this year with my family! If I spend everyday for the rest of my life with them I will be happy. I am just overall a blessed person. It is hard because it is like a running script in my head all day when I stop or if I feel dizzy or tired. So it is always there but trying to focus on feeling good and living every day like it is my last. Will add you to my prayers but the people on this site have helped so much!
…well I found out I had high platelets in my 30s but only was tested for and diagnosed with PV at 65–so you know you can live decades with these tricky MPNs and not really know the cause of some of your symptoms. I hope you young people get something good out of getting a diagnosis so early. Don’t let it grind you down, however worrying. Let it encourage you to live healthily and seize the day.
You had no Jak2 mutation. That is rare in PV, especially if the test was the latest high sensitivity tests. Did your test also look for "Exon 12"? Most likely so, as that is the next test when the Exon 14 is not found. But it's good to ask for details at least to understand your condition as much a possible.
Has your Dr discussed possibility of secondary polycythemia? The "V" in PV actually means the primary type that is MPN.
Hi EP. I’m not sure on the tests but there was another one I did at the same time as the JAK2 test. My haematologist did explain to me there’s a bone marrow test you can do but she was confident I didn’t need that. Had my 4th venesection couple of weeks ago and my latest full blood count has a rise in white blood cells and platelets which isn’t a great sign.
I was told on diagnosis by the attending hematologist that my body has a secret -it can make blood clots and now we know it too.
First diagnosis with ET from a BMB but only months later required several phlebotomy. PV it is. Happily been on pegasys for over a year. I hope you are receiving excellent care and that you are seeing an MPN specialist. If not find a Specialist and get a review of you symptoms and possible treatment options.
Best of luck with the new baby and Congratulations to you and your wife. ❤️
Shortly after my diagnosis in 2020 -( what a crazy year) had my 19 yr old tested and she was also Jak2+. Her ET diagnosis explained her headaches. Together we found a wonderful MPN Specialist. I go to all her appointments and make suggestions to her all the time. I had symptoms for years but never knew this existed and when you search sore feet, vericous veins, restless legs, exhaustion etc and a 50 yr old female everything is menopause.
There is a young MPN group here also.
I am in Canada. Probably similar health care systems. No allele burdens measured, no Besremi and a smaller population of us special cases.
The squeaky wheel gets the grease - so take this opportunity to learn and figure out what you might need - and start squeaking!!!! ❤️😎
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