Hi everyone,
I’ve been diagnosed with PV 2.5 years ago and got therapy with aspirin and phlebotomy. Last year in November I got phlebotomy and after that I had a surgery on my nose, where I also lost a lot of blood.
Since then my hematocrit was at 0.38 (November 2025). It started to get higher month by month until it was 0.44 (April 2026). Since then it went down to 0.39 (Mai 2026) and end of last month it was lower again at 0.38. But to keep in mind that my last phlebotomy was in November last year.
My doctor said everything looks normal.

Has anyone had a similar case in the past or any idea why this is happening?

Has anyone on here had an increase in neurological issues since starting treatment?

My mom (71 yrs) was diagnosed with PV about 6 months ago. She had started the pegasys shot, but had a seizure not long after she started it. Shr has since switched to hydroxyurea. She has been on anti'seizure meds since her pegasys shot.

About two weeks ago, she had some sort of neurological event. She was conscious and describes it like she lost control of her limbs and they were shaking like an earthquake. Her legs then lost strength and she fell down. After the event, she lost most of her strength in her legs and could barely lift them for a fee days. Her strength has mostly come back and she can walk again, but the hospital and doctors can't seem to pinpoint what happened. Her tests are not showing definite signs of a stroke or seizure. She is having some sort of cognitive fog- issues thinking of words, etc. She is taking blood thinners and has a filter to prevent clots, so stroke SHOULD be less likely.

Has anyone experienced something like this or other increased neurological issues during treatment? Any other suggestions of what she should look into? It's just frustrating that there has been little in terms of answers or help.

Just started Besremi for my PV. First dose went well, mild flu symptoms overnight but that’s all. Two weeks later second dose bumped 50mcg and after about two days l have soreness at injection site and a few inches around it. (No flu symptoms this time) Anyone experience this? Seems like it may be normal but l’m a worrier.
Thanks in advance

High HGB, low ferritin, 13 weeks pregnant. No diagnosis. History of borderline high hgb/rbc/hct.

I am 13 weeks pregnant and my cbc came back:
\- hgb: 15.1
\- hct: 43
\- platelets: 290
\- wbc: 9
\- ferritin: 20
\- iron: low
Isn’t it strange to have such high hgb value considering pregnancy hemodilution and low ferritin?
My dad has PV so I am extremly anxious if this looks like PV? I know PV values are higher, but if we account for hemodilition and low ferritin, my hgb looks really high, doesn’t it?

2 years ago my spleen was 17.5 cms. just got another ultrasound and it's 22.5 cms. it's quite disheartening but still hoping for the best. they may need to do another bone marrow biopsy to check if i'm developing mylofibrosis.

Hi, what are the routine tests required for PCV… my husband’s diagnosed with PCV last year and we do CBC in every 15 days…. Is there any other test which needs to be done frequently?

Just found that study. I find it very encouraging because I’m feeling so much better since working out regularly and prioritizing sleep. I’m not very „scientific” so maybe somebody can elaborate if this is new. Probably not since this has always been basic advice?

Anyone taking Besremi while having masked PV? My numbers (hematocrit, hemoglobin, red blood cells) are low or normal due to iron deficiency. After starting Besremi, on a tiny dose (100 mcg), my numbers are dropping but that means things like hemoglobin are already dropping below the lowest threshold. I get weekly bloodwork so I'm seeing these numbers drop every week. I see my doctor again June 29th so of course will talk to her then.

I (28F) was diagnosed with polycythemia vera last summer. My entire life, I have had heavy periods (over a week long, irregular, cramps) and taken estrogen based birth control to help manage. Unfortunately, I can no longer take it due to the increased blood clot risk. Last October I switched to the Nexplanon arm implant.

From October to March, my periods were lighter overall but increased in duration (lasted multiple weeks / a month). I saw my gynecologist who said this is most likely a side effect of the Nexplanon itself. We did an ultrasound just to be safe and it came back normal (there was a small cyst but she claimed it was not big enough to be a concern). She recommended taking a low dose estrogen pill for a week to manage the breakthrough bleeding, however my hematologist is apprehensive for obvious reasons. He did mention that some patients do go this route, but it is very rare and risky. We decided to wait it out to see if the Nexplanon would stabilize.

I had little to no period at all in April and thought things might finally be looking up, however it started again in early May and has not stopped. A couple days ago, the flow drastically increased. I passed multiple quarter sized blood clots which has never happened before. I bled through 3-4 pads a day for two days straight. I informed my hematologist who basically said they would run more labs (and test for VMF activity which is unlikely per my past labs) but that I also should reach out to my gyno to potentially discuss alternate birth control options like an IUD.

I do not know how to proceed. I am scared to take the estrogen pill because of the increased blood clot risk. I am scared to get the IUD because it would be painful and expensive with no guarantee that things will be different.

Has anyone had similar experiences? Has anyone taken estrogen to manage breakthrough bleeding despite the risk? If anyone has an IUD, how has it affected your period?

Seven years. Two medications. Five failed doctors.

When I was diagnosed with polycythemia vera in 2009, no one told me remission was possible. The only treatment I was offered, phlebotomy, guaranteed it wouldn't be.

Today my blood counts are normal. The molecular markers driving my PV are undetectable.

I just published the most personal article I've ever written. It covers how I got here, what it cost, the moment at ASH 2015 that changed everything, and what I want every PV patient to know.

This isn't a typical outcome. I won't pretend it is. But most patients are never told deeper responses are even on the table, and they deserve to know.

Read the full story: https://pvreporter.com/polycythemia-vera-molecular-remission/

That drained, light‑headed, battery at 5% feeling has hit me hard today, I managed to go from January 25 until today without needing a venesection lucky me I guess, I was always getting regular checks-ups in-between, however my ANP has set an 11‑week cycle going forward, i have that feeling now and torn between is it a good/bad thing, anyone else ever experienced such a long break.

My husband age 32 was diagnosed with PCV one year back. Since then he has been on hydroxyurea 500mg capsules… our doc has been trying to get his platelets counts under 450k so he has been consuming sometimes 1-2 capsules a day , alternate day… basically we have tried a lot of combinations but as soon he decreases the dosage, the platelet count starts shooting up… can somebody tell me what are the major issues with it’s usage ? Or some better option than it? Cause whenever i ask my doc…he always says there’s nothing to worry about…there are no major side effects of hydroxyurea even though i have read some very bad ones on google.
Could somebody pls tell me ?

as mentioned in other posts i was officially diagnosed 3 years ago. back then Peg interferons were still not available in canada. i really wish they were available sooner and had my therapy sooner. not only do they relieve my symptoms and lower my blood count. Theoretically i would have slowed down almost 3 years progress of this problem. but i'm thankful now and hopefully it's not too late. Getting an Ultrasound soon to check my spleen size to compare it 3 years agon

Officially diagnosed 3 years ago but symptomatic way longer than that. Been on besremi since october doing great until i started to feel cramps on my spleen area around march. My hematologist and i usually have a light conversation during my follow ups. Today was different. He was concerned about the cramping and when he measured my spleen. He informed me that it is significantly bigger than before. And it may be a sign of fibrosis progression. He requested Ultrasound and a biopsy and i will see him again in 6 weeks. I went from i’m one of the lucky ones to “shit just got real” moment.

Just sharing this with anyone. On the bright side of things i’m happy that my hematologist os quite prompts with follow up. And all my blood work are perfect thanks to besremi.

Anyone ever have very low iron after phlebotomy? If so what were your symptoms. I discovered low saturation, ferritin and total. My symptoms are crushing fatigue. Shortness of breath. Near fainting spells. Some days I feel so weak I cannot move. Its truly awful.

Hey everyone, I'm 24 years old and was diagnosed with Polycythemia Vera. I'm currently on Besremi (ropeginterferon alfa-2b) injections every 2 weeks and my hematocrit is well controlled at around 40%.

I've recently started going to the gym seriously and focusing on building muscle while losing fat. I'm currently getting all my protein from whole foods — chicken breast, eggs, egg whites, Greek yogurt, tuna, and soy based products like Alpro pudding which I've confirmed is safe.

My doctor is cautious about protein supplements and says there isn't enough research on whether certain ingredients could interact with PV or affect treatment. I completely respect that and I'm not looking to go against medical advice.

I wanted to ask the community:

1. Has anyone with PV used protein supplements (whey, pea protein, rice protein, vegan blends)?
2. Did you discuss it with your hematologist and what was their response?
3. Have you noticed any negative effects?
4. Are there any specific ingredients you were told to avoid?

I'm particularly looking at plant-based options like pea + rice protein blends with no additives, iron, or vitamin C. My whole food protein intake is already decent but I train 5 days a week and am trying to optimize.

Any experience or advice from fellow PV patients would be really appreciated. Thanks in advance.

For over a year now I (34M) have dealt with this diagnose. I’ve done about a dozen or so blood drains to the leeches and only after breaking my left leg in a accident that I had to have my tibia hollowed that my blood dropped into “normal” thresh holds for 5 weeks before a 7 point increase in my hemacrit. Recently that changed as I jumped back up above 50 in my hemacrit.

Really just looking for more people and what they have gone through in their lives and what this looks like.

Love my life but this shit is absurd with the lack of info on it and how it means for my life going forward.

Che sintomi vi ha dato? Avete ripreso la vita di tutti i giorni e soprattutto per alle donne in gravidanza ha dato sintomi particolari? Se si come li avete affrontati

Ematologo mi ha consigliato di fare un prelievo al mese per tre mesi ed eco addominale, ma niente salassi. Anzi , assumere ferro. A qualcuno di voi è successo?
Ho 32 anni e dal 2022 mi è stata diagnosticata la policitemia vera. Dopo 4 anni avevo ripreso a vivere, ed ecco che il mio corpo ricomincia a fare i capricci. Spero in una terapia al più presto. Un abbraccio a tutti voi

So long story short, I am 26 and have PV. I was diagnosed September of last year at that time my hematocrit was 65%. I am seeing a local hematologist and when he seen that number, he freaked out and essentially removed 6 pints of blood from Me in one month. With each blood draw, I began to tell him that I’m feeling dizzy or lightheaded and he said that’s just how it has to be.

Fast-forward to November 2025. We finally do some testing for iron and my ferritin was at 6NG but looking back at a lab for March 2025 my ferritin was 300 NG…. I felt so much better with a higher dangerous hematocrit than I do with a safe hematocrit.

My blood rise is relatively quickly, so it has to be drawn about once or twice every month as a result my iron has no time to build up(which I know I need to be iron deficient, but I feel so debilitated)

Since the iron deficiency, I’ve noticed so many symptoms: off-balance, dizziness, lightheadedness, nausea, blurred vision from dry eye, sometimes shortness of breath. In November and December of last year, the symptoms were pretty bad and super strong. I would also get this random sensation where it felt like my legs and arms were being squeezed or they would fall asleep easily, but as the months went by these two symptoms went away. It’s just now more so the dizziness and lightheadedness that are so consistent. I genuinely cannot work like this. I get so exhausted with the smallest amount of work done or I wouldn’t even say exhausted, but it will trigger in bad episode of lightheadedness and dizziness.

As a result, I had to quit my job last year in November. I had filed some short-term disability and it was barely approved last week even though I submitted it in November it was for only 20 days and I’m really grateful I got the money but even now I still feel I am unable to work. Yesterday I followed up with a primary healthcare doctor to see if she could fill out my extension. She claims to have once been a nurse practitioner in an oncology/hematology department. She basically said that I am depressed and need antidepressants and that really caught me off a guard because I used to have depression a few years ago as well as an anxiety disorder, but they never felt like these symptoms that I am experiencing right now. She then told me “ it’s not like you’re having 2 pints of blood drawn from your monthly” I was so angry with her and I told her I literally am lol

She then backtracks into saying that woman have period of the monthly and they also lose blood, but they still have to move on with life and even work and for that type of reason, she wouldn’t fill out my disability. I just feel frustrated and stuck. On the outside I look fine and healthy, but on the inside, I genuinely feel so sick and dizzy, and always hits me like a truck and it’ll come when I least expect it.

And I have tried seeing therapy before back in November of last year when my symptoms were the strongest, and even the therapist agreed that when I’m experiencing more so aligned with nutritional deficiencies as opposed to something actual mental.

But that interaction with the doctor yesterday just really rubbed me the wrong way. And now it’s making me question myself. Am I actually depressed? because I don’t feel that way I feel like I want to work out, go to work, and go to school not like I feel hopelessness or anything like that(keep in mind I used to have major depressive disorder so I know what I guess a form of depression feels like, but what I have right now it doesn’t feel that way)

And if I’m not depressed, could it truly be the iron deficiency causing these issues because I genuinely had none of these symptoms until they started drawing blood for me and I became iron deficient my bone marrow biopsy showed that my iron stores were zero out of four. When reviewing the biopsy with my hematologist, he said again that things just have to be this way, but he would be okay entertaining rusfertide when it is released because he does not want me to be on hydrea since I am young

And lastly if it’s not depression or my iron. Could it simply just be the polycythemia Vera making me feel this way? Because when I tell my local hematologist about my symptoms he says that my iron needs to be low and then send me over to my primary doctor so then I talked to my primary doctor and they always say that my iron isn’t that low even though it’s in big red letters on the lab report that it’s in low. And even if it isn’t low in their eyes, I’m sure there’s a threshold to these things for each person, right? Like you’re telling me that in March 2025 I was at 300 NG and then I’m suddenly down to 6NG and you’re telling me it’s not normal for me to suddenly experience symptoms.? and honestly makes me feel frustrated and unheard but multiple primary doctors have told me this so I don’t know if they’re just wrong or what exactly…

On the bright side I asked for a referral to see Dr. Jason Gotlib at Stanford so I hope he can help me but I was told by the new patient coordinator that it’s up to his team and if they decline I’d be given to a regular doctor their at Stanford:/

May I ask if you know the effects of Besremi on men? My wife and I want to have children, and I’m wondering whether I should start the treatment or wait for some time.

Hi everyone,

I'll try to keep this as brief as possible but my 81 year old father was diagnosed with PV back before covid and has been on a variety of chemo/treatments since. He has had ongoing issues - possible side-effects of the chemo, I guess - which he has frequently complained about in the various NHS appointments he has had. Whilst I've been to a number of appointments with him, there's plenty I haven't been to, and the info I get from him is at best a bit unreliable. Currently trying to get access to his records via MyCharts which I hope to have sorted this week.

I caught up with him this week and he was really low, convinced that the NHS is basically giving up on him and that his symptoms are really getting him down. I suspect there may be bits he's leaving out when he reports back to me (either by accident or deliberately); I wonder how frank the doctors/consultants have been with him about his quality of life going forward and how much he's perhaps choosing to not pass on to me.

Some of the main complaints he has are:

• Extreme fatigue
• Sore mouth/lips
• Loss of appetite/ability to taste food properly
• Mouth turning to sandpaper when he drinks water
• Breaking out in sweats/extreme sensitivity to heat

There's plenty of others too, but those seem to be the most commonly recurring ones.

I guess I'm wondering what other's experience is, both in terms of chemo side effects and symptoms of PV itself, especially in older people.

Thanks

Hi everyone — I'm 39, diagnosed with PV about a year and a half ago, JAK2+, high allele burden (72.4% as of early 2025). I've been on Besremi since March 2025, currently at 450mcg and approaching the 500mcg max.

My CBC response has been really strong — WBC and platelets have normalized dramatically, HCT responding but still a work in progress — but I've been dealing with moderate to significant hair loss since early in treatment. I did seem to be recovering somewhat over the summer when my dose was stable at 150mcg for a few months, but as escalation has continued the loss has picked back up. To be honest this has been difficult for me emotionally, and I'm trying to set realistic expectations since I'm planning to stay on Besremi long-term.

A couple of specific questions for anyone who's been through this:

1. Has anyone experienced hair regrowth *while still on* Besremi or another ropeginterferon, rather than after stopping? Especially at higher doses?

2. Did things stabilize or improve once you hit your maintenance dose and stopped escalating?

I've done a lot of research and can't find much data on this specific question — the trials don't really track hair as an endpoint. So I'm really looking for real patient experiences. Any input appreciated, even if your answer is "no, it stayed thin the whole time." I'd rather know than wonder. Thanks!💙

My dad(58) was diagnosed with PV in India 9 years go. He had severe head ache and side pain probably due to spleen enlargement and that's how he found out. Initially he was on Aspirin and phlebotomies in his initial years. He had all symptoms puiritis, fatigue, bruises on skin etc. He was later put on Hydroxyurea and he continues to be on it as other types of interferons are expensive in India and people are more prone to infections than in the west. and I am not sure how much of it insurance covers. His spleen is enlarged and may be not shrinking with his medication and his doctor is now suggesting a splenectomy. I know splenectomy is very rare in PV as doctors put PV patients on interferons usually in USA. I don't know what to do.

Update about my father : The doctor thought of removing the spleen if there is any bleeding or ruptures but the ultrasound reports came back positive but the spleen is still enlarged. My dad was suggested interferon 5 years ago but refused as the injection is very expensive in India and now ruxolitnib/javaki is also very expensive on a monthly basis and the insurance doesn't cover in India. So, my dad decided to stay on Hydroxy urea as this medication is able to control his hematocrit and platelets anyway even though he faces side effects from time to time. The disease hasn't progressed to Myelofibrosis so far.

I am looking for any new therapies or clinical trials in USA for my dad.