Hi friends,
I have been diagnosed with PV three weeks ago and my numbers are that high, one blood withdrawal and my hemoglobin is down to 14.7 and my HTC is 0.45 but my platelets are 618. Do you think I need to start medication soon given the number of platelets? I’m on aspirin only(hopefully this only what I need). What to expect? What is life expectancy especially at this age? I’m 32 and I have two toddlers but fortunately I’m symptoms free
You should have a normal life expectancy providing you have regular check ups re blood counts. Progression to MF (the bad one) is very low for someone of your age.
I say ‘normal’ as opposed to the official ‘near normal’ because you have so much time for new drugs to be developed/introduced. My view is that we just have to hang around for 5 years to see the benefits of all the current research. You should have decades to wait! Our MPNs have not had much attention in the past but this has now changed. The general view amoungst Hems is that 5 years will give us next round of drugs to halt progression and then another round of new drugs 5 years after that. This will be an ongoing process and potentially offers good life expectancy, especially for MF.
Re your Platelets, unless you have other risk factors 600 is not that bad. My Hem would only have given me drugs if over 1,000.
Please relax and just enjoy life, you will be fine. Just have to get used to the aggro of regular blood tests to keep your HCT down plus venesections as required.
As PV progresses, you might get a bit of fatigue and itchy skin but hopefully some way off, if at all. And those new drugs are in the pipeline......!
Hi Paul, thank you very much for your message and for taking the time to respond to my message. It’s surely reassuring! Hopefully will have new better drugs soon! For how long have you been diagnosed with PV?
What would we all do with out you to support us? Your knowledge, words of support, and wisdom are second to none. A lovely supportive response. I do hope you get the support you give others Paul
Thank you Paul for this info. I have found that PV is not as high on the list of cancers in the US. Only people who know about this are those in medical community. So, following everyone from out of country has been extremely helpful. I even take this to my hematologist and she is very opened about discussing different alternatives. My only complaint with this disease is that my hands become numb..like they are sleeping..and then the tingling when I start moving around. My cbt salve has helped to stop that and during the course of the day, I take a Motrin 800mg. This makes the pain manageable. I haven’t had a phlebotomy in about 6months...just go in for hydration which helps. Again thanks to everyone on this site for the support and the info..
Keep the faith!💕
Sheryl
Hi , I was diagnosed with PV at 42. My platelets were 1.7 million before I started medication and they are in the 500’s now. I was only on aspirin at the time also. It’s been 5 years for me . You will do just fine just have you blood checked and monitored . I go every 4-5 weeks ever since. Good luck. Are you Jak2 positive??
Hi Yarw, I was diagnosed PV 13 years ago aged 50 and a few years after that jak2 neg, I have been on Asprin and regular reviews ever since with 3 to 4 Venesections annually. My symptons are mainly fatigue , some Bone pain and Brain fog.
With regard to your worries about life expectancyas was said above don't worry too much most of us MPN's will mostly likely die with the disease rather than of it !
Most of all mind yourself and enjoy your toddlers..
Garry
Hi redumbrella, thank you so much for your message! Reading your messages make me feel better!
Hi Yarw, I was diagnosed with PV with high platelets four years ago, at the age of 50. The only symptoms I had then were visual disturbances (silent migraines) and painful toes. I was on aspirin only for one year which resolved the symptoms. Then platelets reached 1.5 million and I started Pegasys interferon (90mcg/week). Venesections were not feasible as a treatment for me because of high platelets (as it increases platelets further). Today, my counts are all normal, I only inject once every 3 weeks (45mcg) and lead a normal life, with full time work and teenage sons. Most of the time I forget I have the disease 😊 So there are effective treatments for PV and much research is on-going which is very promising. Good luck to you. Susana x
Hi. I was diagnosed with ET about six years ago (how time flies!). Since then rediagnosed with PV. Didn’t start drugs until earlier this year when platelets hit 1700. Age 60 or platelets above 1500 are generally regarded as the markers to ‘start a conversation’ about drug intervention. (Unless there are other compromising health factors.) You have a long way to go!
Diagnosis is always a time of great anxiety and confusion (we’ll all testify to that!). Give it time and your MPN will become background noise and you’ll forget about it.
The understanding and management of MPNs has changed exponentially in the past ten years and as Paul points out is constantly evolving. Diagnosis, approach and outlook is going to appear very different in the next ten years. Your age is on your side. Embrace the fact you are symptom free, enjoy your kids and just live your life. All the best.
My husband is 35 he with diagnosed with pv and et,he's had it nearly 2 yrs now he's now on interferon injections and bloods have been perfect for just under a yr.we see our consultant the other day and couldn't believe how well he looks x
Hello Yarw Our son was diagnosed at 37 with PMF , Thankfully he is very fit and well. He was 49 last July. Bye GIll
Hi babbittybumble! Thank you for your amazing message! I’m glad your son is doing great after 12 years. Xoxox
Try not to worry. We are all different and if you have a good haematologist, they’ll be able to decide on your individual needs what the best treatment is. My husband was 46 when diagnosed with PV . He was very well with his PV for 28 years only needing venesection every six weeks-no other treatment. He did have itch but it was tolerable . Not having the shower too hot and getting dried and dressed promptly helped. So try not to worry and instead enjoy life as much as you can. He progressed to Myelofibrosis four years ago and has done well, despite having 23cm spleen which I think increased over the last few years. He developed gout which is well controlled by Allopurinol. Last year things seemed to be progressing-fatigue,bruising, weight loss and larger spleen so he started Ruxolitinib which helped. We’re not sure what’s going on at the moment -hgb going down and some immature cells but what you should take away from this is that he’s led a normal active life for over 30 years since diagnosis ( and he’s still active and doing more than many other 78 year olds) and the chances are that you’ll do the same. The Patient Power videos are very helpful too. It’s great to have this site to share concerns and information. I wish you well.
Hi,
If you need to know more about PV and related conditions then take a look at mpnvoice web site as there is a lot of good info there.
Best wishes, Lyn
Thank you so much lyn, xoxo
Hello
You have had some excellent replies so don't really need my input, but ah well... 
I was diagnosed with PV at 29, 30 years ago. At that time much less was known especially how it might affect younger people, as others have pointed out there are so many options now, and more in research stage.
I work more than full time and whilst I do have some fatigue, generally I get on with life these days. I imagine life is pretty busy with two toddlers! Good luck with your journey. Fee
Hi Fee! Thank you for your message, it makes feel great. At what age where you diagnosed with PV?
Hey! Another young person with PV. Nice to meet you, though I wish it were other circumstances, LOL.
I was diagnosed last year, right after I turned 31. And while pregnant! Never a dull moment.
So far, I’ve just been on aspirin. I have experienced fuzzy edges to my vision, headaches, stiff neck muscles, and significant itching. The hematologist I was seeing while pregnant, who was associated with my OB’s office, had me start taking a second aspirin to try to bring that down. It didn’t work well for me; my hematocrit is still up at 47.5%. 
One piece of luck is that I live in Houston, so I’m just down the highway from MD Anderson. No idea where you’re at, but they’re spectacular, if you can get there. My doctor, Dr. Pemmaraju, actually has a specific interest in young people (39 & under) with MPNs. The paper he and his co-authors recently released may help you feel better about having been diagnosed so young. ( ncbi.nlm.nih.gov/m/pubmed/2... )
As far as my own treatment is concerned, he’s added phlebotomy to the aspirin regimen. It immediately cleared the vision fuzz and brought the itching down significantly. Still having a bit of that, and occasional headaches, but it’s better overall. He may move toward Pegasys; HU is out because recent research suggests it increases the likelihood of progression to AML. We’ll see what he says next time I’m in.
The study of young people with MPNs and the development of new drugs like Pegasys and Jakafi are all good signs pointing to long, healthy lives for us both. :3
Thank you lynxfluff! Thank you very much for your message! Fist congratulations on your new arrival! I’m sure it was hard to be diagnosed while pregnant. How are you coping now? I live in Toronto, I was diagnosed while I was out of country and heading back to Toronto next week so will find a good doctor (fingers crossed)! Thanks again for your message!
Thank you! It certainly was a shock, but the little dude actually helped temporarily... Turns out that your body creates more fluid for your blood while you’re pregnant, so my HCT dropped to 32% and my PV symptoms all went away, LOL. My numbers have all ramped up since, but it could be worse.
D: Uh-oh. I hope it didn’t ruin your holiday. But hey, at least it sounds like we’ll have time for loads more of those, right? :3
Usually you don’t start any meds until your platelet count is over 1.2mil. You are half way there though. Phlebotomies will increase you platelets so keep an eye on them.
I’m 31 year old male. I had to start Hydroxyurea because my platelets were 1.3 million. With 1,000mg Hydroxyurea a day that numbers are now 290-330.
Feel free to stay in touch with me if you have any questions. I’m well taught on the PV subject
Hi Cambrook! Thank you for your message! When were you diagnosed? How are you coping now? What’s the outlook for people our age? Why did you decide to go with HU over Interferon? I’m feeling much better but I still have my down moments when I think about the progression risk!
I was diagnosed April 30th this year. I’m not worried about progression. I have accepted that at some point in my like I will have acute leukemia or MF. I made my doctor start me on HU even before I had my bone marrow biopsy. (4/16/18) Bc of my platelet level. I’m doing fine now I guess. I’m not %100. I still get fatigued often and other stuff but it’s much better than before.
Hi Cambrook, why are you saying that you will get acute leukemia or MF at some point! My understanding the progression rate is low (10%) and it’s even lower in our case (given our age)
Progression is based off the common diagnosis age of 60 years old +. Based on that and my age I have a much more increased chance of progressing into MF or acute leukemia. I also will have a much higher % of a chance to acquire another type of cancer. This is because I will be alive much longer with this cancer than a person diagnosed at the age of 60 years of age or older. You must know that most everything they have on PV is based off of the age of 60+. You also know the life expectancy of a person with PV is an average of 15 years. That too is based off of the age of 60 years or older.
Hi Yarw. Sorry to hear of this like you, I'm in my 30s and just recently diagnosed. I am not sure on the life expectancy, as most people who are diagnosed are in their 60/70s I believe. I do think we can still live a normal lifespan with this blood disorder. For me, as I had heart issues, I am at more risk. Wish you all the best!
Hi Kesslerkev2711,
I apologize for my late response! Yes many people have been diagnosed early in life and still leading an active life. Good luck in your journey and I wish you all the best!
Best,
Yarw
Help with contact details for a specialist I can contact near rotherham I have pv jak2 positive I am only 47.
My just diagnosed 3 weeks ago
Newly diagnosed with PV JAK2 positive 
Newly diagnosed with pv
Elevated platelets - help
