I am curious: What symptoms did everyone have in the beginning for PV?

Hi. Same here. Itching is gone, but the fatigue is here. Hemoglobin level is +/- 11, so not low enough to explain the high degree of fatigue, but yet the fatigue is ever present.

And yes, my itching was major after emerging from a hot bath. Had to swallow a bunch of antihistamines to get rid of. Thank God that phase eventually passed.

I had ocular migraines and painful clotting with my periods. Took a year to connect the two and get diagnosed with PV.

Hi, I was diagnosed in April and its been quite the roller coaster of symptoms. Crashing headaches, extreme fatigue, shortness of breath and very itchy especially after shower (not giving up a hot shower, my entire adult life I've lotioned from head to toe and it helps). My hemoglobin was 17.8, had 3 phlebotomies in 3 weeks, then went 2 weeks (13.1 to 14.2 to 12.4 most recent) My hemo/onc wanted to take me down to 11 and go from there so this week at 12.4 I opted to get it, the NP who reviewed my CBC results said I didn't need one and I'm putting myself at risk for being anemic. I have had very severe shortness of breath & fatigue (symptoms of both PV & anemia) however the air quality in NJ from the Canadian fires is likely a big contributor. I got my phlebotomy Wed (I call them Vampire Visits, getting a VV for my PV 😉 ) and I've stayed indoors for 2 days.
I also was diagnosed with SIBO last year, lost 45 pounds in a couple months and no one ever wants to lose weight that way. It's been hard work fixing my gut and unfortunately I think it's relapsed so ill need to go through the whole protocol again.
I'm very active, skiing is a big passion along with travel, hiking etc. It's been frustrating being held down because my body just can't move well at times (I started taking an amazing vitamin that helps a lot with the aching joints, my hands especially). I'm working on finding the balance with eating some iron rich foods to help the anemia without my body generating to much extra blood. I'm on a low dose aspirin, don't want to take any medications unless it's absolutely necessary.
I'm thinking within 2 more months I'll have found my new norm with frequency of phlebotomies needed to keep symptoms in check and have much fewer bad days.
I had quit my job in Dec to start up my own business as a Senior Care Advisor, my previous Inhome Care for senior's biz I sold in 2015 and went back to a Corporate gig at a Hospital and then a non profit. Not the greatest timing with no income coming in but I have a good reserve thank God. I've been single for over 20 years and all my kids are grown and on their own and 2 grandkids 16 & 14. My greatest joy in life, taking my grandson to see Zac Brown in Oct and working on Lady Gaga in Vegas with my granddaughter.
I recently told my folks, I ski with my Mom and she's 83 this July, that if this shortens my life from 95 to 85, I'm at total peace with that. I won't let this define me or keep me from living life to its fullest.
It's accepting I'll have some down days now and then and I need to be OK to not be OK.
This forum has been a tremendous help, thank you all for your posts and insights. We're all on this journey together and each have a different path our bodies will take. We can't cure it unfortunately but I tell everyone, if I'm going to get any cancer, I'll take this one. I donated blood for years (I have the good baby blood, or should I say had) and it makes me sad they can't give it to NICU babies any longer but all those years of donating has kept PV in check, Covid and no donations brought it to light. It then explained my more frequent headaches, BP going high for no apparent reason etc.

Keep the faith everyone!!

The NP I met with this week said she has one patient with fatigue and their numbers are good. I'm going to remain positive that I won't have that. The fatigue is terrible and I do not do well with resting.
Stay strong, and hydrated 😉

I am taking 1000 hydroxyurea each day and blood thinners.But now have pain in most of my arm joints .lower back and upper back.

Trying to figure out if that's the Pv or Hydroxyurea .Anybody else have any answers or symptoms similar.

Interesting. My hematologist said blood thinners were not an option for me. I can’t remember why. She did say it would not help my Polycythemia.

Thank you do you take aspirn instead

I had developed bad high blood pressure. I was put on medication to help with that. I also had sever headaches, shortness of breath, and bad lower back aches. Most of the symptoms I attributed to stress from my job and previous sport injuries. As my PV was progressing I started to have frequent nose bleeds which prompted me to go back to my Primary Care (PC). She ordered a full blood work. The results were off the charts. I guess my numbers were already off the charts over a year and a half but my PC didn’t think it was serious until my blood pressure kept going up and constant visits to urgent care to address my other aches and pains. She finally referred me to therapeutic phlebotomy, with no real clear explanations. I started doing weekly phlebotomies to help with the high hematocrit numbers to avoid clots. I am not on blood thinners as I was told the phlebotomy would help with that. My PC wanted me to do a sleep apnea study to see if that might be the cause. After some research, I finally got my PC to submit for JAK2 testing and the results came back positive (2 weeks ago). I was then transferred to oncology and no more phlebotomies as the new Dr didn’t think it was necessary. He started me on Hydroxyurea 500mg so far none of my symptoms have changed but its still early in the process. I am still trying to navigate this process and get a care plan in place to address the symptoms. Up until last year I was still very active, participating in regular fun runs 3k, 5k and half marathons, working cattle, and farming. Since my symptoms have progressed I have been sidelined from these activities. My goal is to get back to these activities as it is my escape from the daily grind of work.

Update: So I had my follow up with my cardiologist and according to him there's nothing wrong with my heart. He referred me to GI and urgent care has even referred me to Pulmonary drs.
But, since I'm being referred everywhere else, I've short cutted the system and saw a hematologist on Friday. After reviewing my notes that included my bloodwork over the last 11 years, he asked if I was having any itching, which I haven't yet. He apparently suspects the same the thing and is running additional tests including the genetic test I believe. I'll follow up with him July 10

I was 75 and noticed severe itching after swim/bath. PC was uninterested in elevated hematocrit(57), but his pa suggested I see a hematologist. I had a biopsy that confirmed jak2 mutation and have gone from 500 to 1000 hydroxyurea. I am now 78, itching has gone and all numbers are good. But the fatigue is awful. We have moved and my new hematologist says they just react to symptoms i.e.when crit is up, time for phlebotomy.
I also have been treated for skin cancer so sun exposure is a no no. It becomes a waiting game as docs don’t seem worried yet. Good luck! jjd