Has anyone ever tried to apply for assistance through Rare Disease Careline? I’ve tried calling right at 8:30 am eastern time, and I’ve tried applying online at the time starting the second it hits 8:30 and also at midnight eastern with no luck. What’s the actual best time to call or apply online?

Levels are within normal range and I am not in need of a phlebotomy. Which is good however…my MCH and MCHC are low and my RDW is high which points to anemia. The funny thing is I have not had a phlebotomy since February…so how can I be anemic? Has anyone had this happen to them before?

Hi all, I was carrying heavy grocery bags and later noticed small reddish-purple bruises on my fingers and hand creases. I’ve been diagnosed with ET, but my NP suspects it may now be PV. I just had my first phlebotomy, not on meds except on low-dose aspirin.

Anyone else get this kind of bruising from minor pressure? Should I be concerned?

Is there anybody here who is TTC while taking interferon? I have no symptoms but my numbers are creeping up and phlebotomies are not having the impact they used to. Interferon has been proposed as a treatment option for my PV and the literature on its safety in those TTC is positive but limited. I’m feeling like I’m on an island as PV is rare in the first place, add on trying to conceive and the info is so limited—the weight of this decision is overwhelming. Even just the impacts the side effects could have on me is making me nervous. Hoping there are others out there to connect with on this.

My symptoms (all the usual ones) appeared at the age of 41, but looking at my medical records my hematocrit and other numbers had been elevated for some time.

Is this common?

I’m 43, just had a heart attack in May, and bloodwork showed I had Jak2 and confirmed to have PV. They didn’t do a bone marrow biopsy as the hema told me it wasn’t necessary.

1 month in, they put me on daily hydroxyurea (500mg) and I start a 8 week phlebotomy regimen. I’m already on aspirin due to my heart attack.

That being said, I was super active, prior to HA I was working out 6-7x a week, and post I’ve taken it easy while waiting for cardiac rehab and now play around 2 rounds of golf a week. I plan on going back to my active self once cleared.

Hematologist told me I will live a full life with this but I’m super scared and unsure of what’s going to happen or whether or not to even believe him. I’m sure what I’m feeling is like most people here when they found out. Hoping it gets better.

Can someone share their experiences with me as I am not taking this news well? I’m finding comfort in seeing responses in other posts hearing about peoples lives and how you’re all thriving with this! I want to believe my hematologist but right now I’m at a low point. Thanks!

Hi, I have a surgical extraction of a molar scheduled. I’m a 32-year-old male. Has anyone experienced any complications with this procedure? I also had a phlebotomy 40 days ago.

I suffer from terrible brain fog. It makes it impossible for me to access memories or perform the most basic tasks. I was just speaking to my sister who went to my doctor appointment with me and she said that the doctor told me that this would happen. Of course I don’t remember what he said.

She was diagnosed at 58, 5 years ago, after she had a complicated thrombosis. She is medicated since then with hidrea, today they told them to take 1 more pill a day...4 in total(+antiguagulants) because she had her levels on 40. She is always tired, I can't see her suffer like this. I want to know what else can we do or know how long is she going to be alive

Hi guys, I'm from Italy, I am 25, and I was diagnosed with PV in December 2023. I'm positive for JAK2 and had 2 marrow biopsies, analyzed by 2 different doctors, that confirmed it. Now I have the chance to relocate to Amsterdam, but I know the healthcare system is private in the Netherlands, compared to Italy, where it's completely public and almost everything free. I don't know anything about how sanity is handled.
- What would be the impact on the private insurance ill need to subscribe to? I know the basic one is around 140 euros/month.
- Which is the best center or hematologist in Amsterdam/The Netherlands for PV or more in general MPN?
- Any suggestions on how to handle PV there?

Thank you so much!

I finally got over my dad’s death that happened back in 2020.. I was his main caretaker and I’m a little messed up from it now. I kept telling myself that I never want to see any blood cancers ever again and now im about to meet with my oncologist for the first time about PV

I’m terrified, not of PV, but of it having the slightest chance to morph into acute myeloid leukemia. I’m scared of leaving my kids behind, my husband, my dogs. I’m honestly scared to wake up knowing I’m probably going to die in a few hours.

Sorry, I’m venting. I really don’t know what the point of this post was, maybe it was just to have more insight or to vent to people that get it.

UPDATE: I will probably change meds to Interferon because my platelets are going back up and haven't stablized after a year of Jakafi. After changing meds, I will revisit the perimenopausal symptoms. But yeah, can't do HRT on Jakafi due to blood clotting risks.

Are there any patients here that are dealing with hormonal imbalances due to perimenopause? I wanted to start HRT but it is not safe due to an increased risk of blood clotting. I came to this conclusion because I have night sweats, sleep disturbances and feel like an emotional wacko the week before my period then symptoms subside a bit. I am on the highest dosage, 25mg, of Jakafi yet still have these symptoms so I was thinking it could be hormona instead or l as well. It is hard to distinguish what is causing the symptoms. Is anyone else here on 25mg and still have symptoms? TIA

I've had three phlebotomies since October. Before the phlebotomies, my RDW was normal, at 14. However, it has now been rising every month, and is now over 20, which is abnormal.

Could phlebotomies cause rising RDW? If so, why? And is this something to be concerned about?

Due to several cases of miss communication at the hospital I get my meds from and slow delivery.. I'm without meds.. how long is ok to go cold turkey?

I've had to half dose the last 3 days to prolong my supply... But I'm now 100% out and the hosp doesn't have any more to offer me for the weekend onwards..(apparently I'm their only client on it)

This is month 3, and each time has been a pain in the arse to get my next supply, we think we have a plan for next month but it doesn't help me now :(

Nausea I mentioned in previous post was about 10 days before it subsided if anyone was wondering...

Thanks guys

Even for low risk cases of PV all the scientific evidence seems to point to either Pegasys / Besremi or Jakafi if you are over 60.

Why are doctors still treating PV with hydroxyurea if it doesn’t stop the disease like the modern drugs?

Is it only because -sadly- they mostly seem to be ignorant of PV, is it because it’s cheaper or are there genuine cases where hydroxyurea is better and I ignore?

I’m 27M. My bloodwork has always been high ever since I was 18. My latest bloodwork are RBC 6.1, HCT 54.7, HGB 18.1. Platelets normal. My hematocrit fluctuates between 53-54.5 on my bloodwork and my hemoglobin is always around 18 over the past 3 years.

I visited a hematologist back when I was 18 and tested negative for Jak2, but he never found a secondary cause (I don’t smoke, drink, or have sleep apnea) so he just said I had possible PV. I moved away so we never followed up. I don’t donate blood.

From my understanding, PV life expectancy is under 20 years. Is that still the case in young adults? I’m honestly concerned that I will die young from this.

This is the first time I had a Iron Panel and Ferritin level done. Iron panel was normal, but the Ferritin level was high. If you have had a high Ferritin level, what was done to get it back to normal ranges?

Hiya, 30F here. I started my diagnosis journey in March of 2025 so everything is still fairly new.

Has anyone else noticed a correlation between social anxiety and increased symptoms?

Ex. Feeling overall fine, going to the grocery store and then feeling extremely light headedness. Once I get home my symptoms usually subside as I remind myself there is no reason to be anxious at home.

Also I had a phlebotomy today and hoped it would provide me energy to hang with friends but I ended up getting so anxious, light headed and blurred vision. Once I left the area my symptoms slowly subsided.

I wasn’t sure if the increased heart rate from these situations causes the symptoms to appear much greater or if I’m just too much in my head.

I lost my spouse in 2023 to a stroke so I’m heavily anxious in general but this does not help.

Overall - correlation or causation, thoughts??

Hi Team, I just started Jakavi about 6-7 weeks ago, was feeling great at the 4-5 mark but the last week have been hit with the nausea.

A nurse organised some anti-nausea stuff that wouldn't conflict with it, and was it has helped with the stomache I still feel absolutely trash.

I don't see the doc dealing with this until a phone call next Tuesday, and just hoping this is a hiccup and it'll pass right?

It's been rather disappointing to hit another hurdle as it's been a 2 year journey to get releaf of pain, which this has brought back (I assume it's like when you have the flu everything hurts..)

Would really love some reassurance it's just a temp thing whilst I adjust to the meds and I'll be ok in a few days/weeks..

Thank you all

Hello...does anyone know of any medical literature that specifically categorizes PV as a "chronic leukemia" ?

I need a strong citation to use in my argument for expanded Healthcare benefits. The only thing that I've been able to find (that wasn't behind a paywall) is a Cleveland Clinic patient education webpage.

Would like something more formal/official like a medical journal or medical textbook etc....that I can access for free. 😀

I had Acute promyelocytic leukemia in 2022, so I have been in the medical world and know some things, but i just got news that a HS friend was diagnosed with PV in 2020 and I’m just now hearing about it. I did my due diligence and looked up what it is, side effects, and treatments.

I come to this community asking: how should I reach out to my friend? Being someone who’s not religious and hated when ppl told me “I’ll pray for you” what should I say? The first thing that comes to mind is “that sucks” bc I know it must.

Hi everyone,

I'm 17 years old and was recently diagnosed with Polycythemia Vera (PV). It's been a bit overwhelming, and I'm looking to connect with others who might be in a similar situation-especially anyone around my age.

If you've been living with PV or know someone who has, I'd love to hear about your experiences. How are you managing the condition, and what has helped you the most?

It would be great to connect, share stories, and maybe even offer some support to each other. Thanks in advance!

Hi everyone, I'm reaching out to share my story and hopefully connect with others who’ve had a similar experience. I was diagnosed earlier this year with Polycythemia Vera after presenting with high hemoglobin and hematocrit levels, and eventually, I had a stroke in February 2025.

Since then, I’ve been put on Hydroxyurea, Dabigatran, and Aspirin, and I’m doing my best to recover and adjust to my new normal — including dealing with symptoms like fatigue, muscle twitching, tingling, vision disturbances, and itching especially in hot weather.

What’s confusing me (and my doctors) is that I’ve tested negative for the JAK2 mutation, and my bone marrow biopsy came back normal — yet I still have many of the clinical signs and symptoms of PV, and I was treated as such.

Has anyone else experienced:

A diagnosis of PV with negative JAK2 mutation?

A normal bone marrow biopsy but still showing PV symptoms?

Is it possible to have a “masked” or atypical presentation of PV?

Could this be another type of myeloproliferative neoplasm (MPN) or a secondary polycythemia that just hasn't revealed itself yet?

I’d also love to hear:

What helped you manage the daily symptoms (fatigue, itching, vision issues, etc.)

If you’ve had complications with flying, sitting long hours at work, or extreme weather

How you’re coping emotionally — because this gets heavy sometimes

Thank you to anyone who reads or replies. I’m trying to advocate for myself and better understand what’s really going on in my body. Any insight, experience, or encouragement is really appreciated.

Stay strong, everyone.

PS. I am only 31.😅

Hi everyone, I'm new to this sub and would appreciate your insight.

I was diagnosed with PV in 2020 and put on hydroxyurea and clopidogrel. For the past few years my blood levels have been kept under control. My health screening results in May 2024 indicated that my iron levels were ok too.

However, I started getting tinnitus, a constant rocking sensation (like you're on a boat), burning sensations in my body and frequent brain fogs and migraines from July 2024. I even had what seemed to be a psychotic episode in Nov 2024. The psychiatrist I saw in Feb 2025 couldn't make a conclusive diagnosis other than that I've an anxiety disorder.

I initially attributed these symptoms to my anxiety, but I'm plagued by daily fatigue, brain fogs and migraine regardless of how well I slept the night before. My vision feels blurry and I find it difficult to focus on my tasks. Things got even worse after my recent menstrual period. I started feeling short of breath when walking and I lack energy when trying to do my usual exercises.

I did a routine blood test yesterday, which showed that my platelet levels have gone up by quite a lot (535 ths/ul). My haematologist then ordered more tests, which showed that I'm iron deficient (iron 17.92 ug/dl, TIBC 375.20 ug/dl, transferrin saturation 5%). However, she said that she would not give me iron supplementation as it would cause my RBCs to shoot up. She suggested that I eat iron rich foods instead. I tried to ask her more questions but didn't get any substantive answers.

My questions are:

1. Does anyone else have similar symptoms from being iron deficient? Is it possible that my anxiety was due to this?

2. The symptoms are causing me a lot of grief and I'm not sure that trying to eat iron rich foods would be able to raise my iron levels substantially. Or it will take a really long time. Is iron supplementation really not advisable? What about just taking a very low dose of iron (e.g. 8mg a day) for 2 weeks only?

3. What do you guys do to manage your iron deficiency?

Thanks!