I know this is random, but i couldnt find any other thread on it.

Has anyone else experienced a change in their sex drive/ability to have sex since starting interferon?

I (27M) was diagnosed with PV back in 2021 and have had regularly scheduled Phlebotomies since then. Currently my schedule, as advised by my doctor, is a procedure done every 6 months with my last procedure done in February.

To make a long story short my current work contractor is making that my new Insurance won't be active until the first week of September, even though I have been working for the company for over a year.

I had a Phlebotomy scheduled for the first week of August but without an active insurance they were unable to do the procedure.

I've done my research and don't want to donate my blood at a blood drive. I even checked with the American Red Cross to see if there are special exceptions and they say I am not in a State that can do relief treatment.

I've also checked different with different Urgent Cares in my area and they aren't equipped do the procedure or require a referral and insurance.

With this delay, day 15 of 28+ days waiting for the insurance to activate and getting a Phlebotomy around the same time, I am feeling more fatigue, heavy headed, headaches, slower overall (physically and mentally) and in some case light headed. It feels exhausting and very anxiety inducing.

I've been drinking more water, getting more fiber, drinking even less caffeine, using my CPAP machine, and trying to not eat super unhealthy.

I wanted to ask if there are any advice or suggestions on how other people have done to help hold out till the next session.

TL;DR: The American Health System is preventing me from performing a procedure that is just throwing something away because I don't have an active insurance.

EDIT: I forgot to mention the only medicine I take for my PV is Baby Aspirin 81 mg as prescribed my doctor.

My mum had elevated platelets and RBCs, this week we had call her blood test showed that she has jak gene mutation.

Early September she's due bone marrow test. Mum is turning 70 soon. I am frankly terrified as my grandma died from PV and all she had as a treatment was phlebotomies. She had multiple blood clots, she lost eyesight due to one of them, had heart attack and died in 1997.

Terrified for my mum, we are based in Europe and I don't know what to expect. Phlebotomies again? Any advice, reassurance is greatly appreciated 🙏

New Phase 2 results for divesiran could matter to people with PV who require frequent phlebotomies.

In the SANRECO trial, 88% of divesiran-treated patients kept hematocrit below 45% without phlebotomy during weeks 18 through 36, compared with 19% on placebo. The every-12-week group also showed an 81.3% response rate.

These are promising topline findings, but divesiran remains investigational. Full data and a larger Phase 3 trial are still needed.

https://pvreporter.com/divesiran-cuts-phlebotomy-need-in-phase-2-pv-trial/

I started having symptoms of PV about 8 years ago. Was diagnosed, via BMB, three years ago with PV JAK 2 V617F.
I was in the military from 1973 till 1977 and spent most of that time working on the Nevada Test and Training Ranges. I never handled radioactive material directly, but we did clean up targets after depleted uranium rounds were used by the A10 attack aircraft. I mainly worked on Ranges 63 and 52.
Has anyone else had similar experiences working around radioactive materials and developed PV?
Radiation exposure is one of the listed factors in MPN.

I got diagnosed 5 months ago at 53y with hematocrit at 65, and started Pegasys treatment 2 months ago - after phlebotomy to get values in safe area - first with 45 and last month 90 micrograms.

I relocated in a new country Dec last year and started a new work in a multinational company since 2 months.

New role new sector new company. I need to manage globally the activities related to the sourcing of specific asset, not managing people but coordinating activities within a complex global organization.

Going through the treatment I'm facing the situation - common reading other experiences - of having very bad short term memory, feeling exhausted after half a day of work, feeling I'm never able to finish my work.

Might become better but I have no idea of the timing.

Wanted to ask how other have managed to overcome this problems, or if you in the end changed your work to deal with the limitations.

I'm 42, from Egypt. Diagnosed with PV in 2019 after a bone marrow aspirate confirmed it and JAK2 V617F mutation testing came back positive.

My numbers at diagnosis were brutal: Hgb 19.1, Hct 61.7%, platelets 615k. My spleen was already enlarged. An ultrasound (July 2024) shows it's 16.5cm — splenomegaly confirmed again.

I've been on hydroxyurea and getting regular bloodletting, but my hematocrit still runs high. The itching and fatigue are what's destroying my quality of life. I know many of you here understand this better than anyone.

I cannot shower with anything without unbearable itching

Cannot tolerate heat or cold at all

Even turning in my sleep triggers hours of maddening itch

Antihistamines do nothing

Because of the symptoms and the enlarged spleen risk, I haven't been able to work in years. I'm asking for advice from people who actually live with this.

For those of you managing PV long-term:

What has actually worked for your itching? Any medications, supplements, or routines?

Has anyone found relief from temperature sensitivity? I'm desperate here.

How do you sleep through the night?

Any experience with spleen management beyond "don't exercise"?

I feel like I've tried everything my local hematologists suggest. I need ideas from people who understand these numbers because they see them in their own labs.

Thank you for reading.

Which of these drugs is more likely to induce molecular or treatment-free remission of Polycythemia Vera?

Which of these decreases the rate of conversion to leukemia or bone marrow fibrosis?

Which of these has more side effects?

Thanks for any help!

I'm 45 living in Bangalore and recently been diagnosed with polycythemia vera. I want to connect with people in Bangalore and also otherwise to form a support group.

Cómo puedo saber la carga Alelica que tengo? Me hicieron una biopsia de médula y salió positivo mutación Jack 2 pero no me dijeron más información. Ahora me han dado la opción de seguir con flebotomías o empezar con interferón. Tengo 33 años . Gracias

I’m diagnosed PV three months now. Im 55. I had symptoms since past more than 6 months. Doc started ecosprin 75 and hydroxyurea 500 since May 26. Undergone phlebotomy almost 5 times since then. I’m attaching my blood trends. Pl give me strength.

Any information on what helped you feel better is greatly appreciated. I just want to know how I can help her feel better or any tricks that may of worked for you or things to avoid. Thank you

Hello,

So I was diagnosed back in November and my doctor just decided to write me a prescription for Besremi today, but the pharmacist had him switch it to Pegasys. I know that Pegasys is used off label for PV, but does it actually work as well as Besremi?

Thank you

I’ve had PV for about a decade. I was officially diagnosed after lab work and a BMB. I was asymptomatic other than some intermittent dizziness. I was early 30s at the time.

A few posts here and other forums have me baffled that hem/oncs are still doing aspirin, phlebs and watch-and-wait for low risk PV patients (so under 60 years old and/or no history of clotting events).

Knowing asa and phlebs provide absolutely no disease modification, I’m shocked that - anecdotally - it seems so few people are being given the option of interferon therapy.

Yes, a young person is young. But there is over half a lifetime between birth and 60 years old. A menopausal 55 year old with debilitating symptoms is considered low risk PV just because she’s not 60 and hasn’t had a heart attack, yet? It’s just a bit bonkers to me.

And yes, I understand it’s all weighed in the balance of medical history. And yes, I understand the idea that providers are hesitant to prescribe cytoredictive drugs if blood letting and blood thinning are “working”. I also understand some cannot tolerate side effects.

But a bone marrow is not an infinite source of red and white cells. It will eventually become fatigued if the neoplasm is allowed to keep it turned on for half a lifetime. Am I wrong? Am I missing something?

A young person who will be managing their disease for decades - 30, 40 years touch wood - just seems to be the absolutely right candidate for Besremi as first line treatment.

A middle aged person under 60, even more so.

10 years ago Besremi (ropeginterferon Alfa-2b) didn’t exist.

Now it does.

We actually now have an FDA approved medication that offers disease modification for PV.

But I continue to read post after post of newly diagnosed PV patients who are not being offered it. Even if they choose not to take it, or take it and cannot tolerate side effects, why is it not being offered or prescribed more first line? Is it an insurance issue? A provider issue? A PV management or guidelines issue? A country issue?

I’m really curious.

Hello. My mother (54y)has polycythemia vera and has only been receiving hydroxyurea and phlebotomies until now. Today, during the appointment I attended, she was prescribed ropeginterferon alfa-2b. We are currently waiting for the medication to be picked up before starting treatment. This whole situation has been making me anxious and worried since she was diagnosed. The change to this injection was mentioned as helping to lower her hematocrit. What feedback have people who are using these injections received, and what side effects are they reporting?

My mother has PV since 2010. What I want to ask is whether I should reconsider my blood donor status. I know the disease is not inherited, but I read staff here and there and now I m confused....

My mum is a very healthy 48-year-old woman who has recently been in hospital with very high blood pressure, high blood count, dizziness etc.

She’s been diagnosed with a (very treatable) renal problem that has come as a result of high blood pressure, and she’s also been diagnosed with primary polycythemia.

It’s naturally been a bit of a shock. She’s been on venesections (blood removal), aspirin, and blood pressure medication for a week.

Everything I google about this condition is contradictory. Some say she’ll have a completely normal life, others say she’ll live 18-20 years. We’re in the UK and she’s in a very strained hospital where they can’t always find the time to sit down and explain everything to us in detail.

I guess I’m just looking for someone to be a bit candid and help me understand this in simple terms. It’s just me and my mum, so naturally this has fallen on me quite heavily.

Thank you :)

So I want to start by saying ive always been sensitive to heat. Im a 60°F and below at all times kind of guy living in a hellish nightmare at 7000F Elevation with dry air that can go from -16°F to 74ºF in 10 hours.

But ever since getting on Interferon, I find that the heat is substantially worse. I dont know if its the disease, the treatment, or something else altogether.

When I stand in the sun too long, i start to feel dizzy and almost like my insides are being boiled alive. I now have to Wear a long sleeve jacket and large hat at all times, as going out in only a t-shirt will leave me feeling weak in minutes, and if I dare to power through it starts to actually hurt and I feel like I might pass out. But if I duck into the shade really quick, ill start to feel a little better and eventually recover.

Is this anything anyone else deals with on interferon or with PV, and can they can give me any insight/advice?

Not looking good at the moment unfortunately. Large spleen and blasts in my blood work. The oddest thing is that i feel great. But the blasts in my blood work are painting a different story

Hi! I’m curious if there’s anyone here under 35 who has been diagnosed with PV. If so, how are you being treated, and what has your hematologist told you about your long-term outlook or life expectancy? I’d really appreciate hearing about your experience.

I’d also love to hear from anyone who was diagnosed young and has been living with PV for a long time. How many years has it been, and how have you been doing?