by David Wallace, Founder, PV Reporter & MPN Cancer Connection
When I was first diagnosed with polycythemia vera, nobody told me that PV remission was even possible. And the only treatment I was given, phlebotomy alone, guaranteed it wouldn’t be.
Today, my blood counts are normal and the molecular markers driving my PV are undetectable. It took seven years, two medications, and five failed doctors to get here.
Before you read further: complete molecular remission is not common, not guaranteed, and did not come easily. I’m sharing this because most PV patients are never told deeper responses are even on the table, and you deserve to know.
The Early Years: Why Phlebotomy Wasn’t Enough
Like many newly diagnosed PV patients, I started with phlebotomy. It kept my hematocrit in range. It did nothing for the disease itself.
I was miserable. Extreme fatigue, brain fog, bone pain, relentless itching.
I started researching on my own and kept landing on the same thing: pegylated interferon. Unlike hydroxyurea or phlebotomy, interferon has the potential to target the underlying disease at the molecular level. It can reduce the JAK2 allele burden driving PV. That matters.
No hematologist in Charlotte would prescribe it. All I heard were warnings about side effects. I was already miserable, so the warnings didn’t land. I flew cross-country to a renowned specialist and started Pegasys.
Two years in, my phlebotomies were still uncontrolled and the 135 mcg weekly dose had given me significant neuropathy in both hands. I was on the right medication. It still wasn’t enough.
Most patients would have stopped there and accepted that managing PV was the best they could hope for. I didn’t.
The Moment Everything Changed: ASH 2015
In December 2015, I attended the American Society of Hematology (ASH) annual meeting with press credentials. ASH is the largest blood cancer research event in the world, and the data I found there changed the course of my treatment.
Dr. Hans Carl Hasselbalch and his team from Denmark presented early results on combining pegylated interferon with a JAK inhibitor, ruxolitinib (Jakafi). Patients on the combination were achieving deeper responses than either drug alone. JAK2 allele burden was dropping significantly.
I printed out the research. I studied it. Then I went looking for a doctor who would actually listen.
Read my original Facebook post from that day.
Firing Five Doctors to Find the Right One
This doesn’t get said enough in the MPN community: not every hematologist is the right hematologist for you.
I went through five before I found one willing to partner with me rather than just hand down a treatment plan. The others either didn’t know enough about MPNs, weren’t willing to engage with current research, or simply weren’t interested in what I brought to the table.
On the first visit with my current hematologist, I handed him the Danish combination study data. I asked a direct question: can we add Jakafi to my Pegasys and see what happens?
He said yes.
That conversation opened a door. What came next was five years of difficult work to walk through it.
Not sure what to ask at your next appointment? Use our guide: Questions to Ask Your Doctor at a PV Appointment.
Five Years on Combination Therapy
Five years on combination therapy nearly broke me. And I’d do it again.
The combination of interferon and Jakafi is not gentle. These are powerful medications with real consequences.
I developed skin cancer, which still requires monitoring today. I dealt with serious infections. Deep fatigue would hit in waves, the kind that makes a full day of work impossible. My WBC counts dropped below reference range, and low-grade neutropenia became a recurring issue. Dose modifications happened often, sometimes right when we thought we’d found the right balance.
I kept going because I understood what we were working toward, and because my physician didn’t flinch when things got complicated.
Remission didn’t come easily. Anyone considering a similar path deserves to know that before they start.
Where I Am Today: Complete Molecular and Hematological Remission
For all practical purposes, I don’t have active disease.
I am careful with the word “cure.” That is not a term most hematologists will use, and I respect that. There is no cure for PV at this time. What I can tell you is that my day-to-day life no longer revolves around PV. I feel good, and that is something I couldn’t say for a long time.
I share my outcome not to suggest it is typical. It isn’t. I share it because most PV patients are never told this level of response even exists, let alone that it is worth asking their doctor about.
What This Means for You
Deeper responses are possible. That is the single most important takeaway from this article. Most patients never know to ask for them.
The treatments most associated with molecular response in PV are pegylated interferons. These include Pegasys (peginterferon alfa-2a) and Besremi (ropeginterferon alfa-2b), the first interferon FDA-approved specifically for polycythemia vera. Research continues on combining interferon with JAK inhibitors like Jakafi.
Phlebotomy and hydroxyurea manage counts. They do not target the underlying disease.
Not every PV patient will achieve what I achieved. Some reach partial response. Some stabilize. Some face complications that change the treatment course entirely. My path required access to specialists, years of patience, and knowledge about financial assistance programs for expensive medications. Those realities matter. Plan for them.
If your goal is the deepest possible response, have that conversation with your doctor. If your doctor won’t engage with it, consider finding one who will.
Resources to Help You Take the Next Step
- Looking for an MPN specialist? Use our MPN Specialist Locator, the only doctor-vetted list on the web.
- New to PV? Start with our PV For Newbies guide.
- Exploring clinical trials? Our free MPN Clinical Trial Finder requires no personal information.
The Research Behind Combination Therapy
For patients who want to go deeper, here are the key studies that informed my treatment path and continue to shape how combination therapy is understood in PV.
COMBI I: The Original Combination Study (2020)
This was the first clinical trial to investigate combining ruxolitinib with low-dose pegylated interferon alfa-2 in PV and myelofibrosis patients. Led by Dr. Hans Carl Hasselbalch and his team in Denmark and published in Haematologica, the study included 32 PV patients, most of whom were intolerant or refractory to interferon alone. Results showed 31% achieved remission, with a significant reduction in JAK2 V617F allele burden across the group. This is the research I printed out and brought to my hematologist’s office.
Read the COMBI I study in Haematologica | Free full text via PubMed Central
COMBI II: Updated Data in Newly Diagnosed PV Patients (2024)
The same Danish research group followed COMBI I with a second phase 2 trial, this time in newly diagnosed PV patients rather than those who had already failed other therapies. Published in Blood Advances in 2024, COMBI II reported high rates of hematologic and molecular response with manageable tolerability. The significance is real: it raises the question of whether combination therapy should be considered earlier in the disease course, not just as a later-line option.
Read the COMBI II study in Blood Advances
RuxoPeg: A Separate Phase 1/2 Trial (ASH 2018)
The RuxoPeg trial, led by Dr. Jean-Jacques Kiladjian and presented at ASH 2018, tested a similar combination approach in MPN patients. Early results in the first 16 patients enrolled showed the combination was well-tolerated with no dose-limiting toxicities. It reinforced the direction the Danish team was already pursuing.
Read our ASH 2018 RuxoPeg coverage on PV Reporter
These studies reflect research findings and are not treatment recommendations. Discuss any treatment decisions with your hematologist or MPN specialist.
Watch: My Polycythemia Vera (PV) Remission Story
Recorded at Cherry Grove Beach. A three-minute video on what it took, what changed, and what I want every PV patient to know.
Frequently Asked Questions About Polycythemia Vera Remission
Can polycythemia vera go into remission?
Yes. Some PV patients achieve complete molecular and hematological remission, meaning blood counts normalize and the molecular markers driving the disease become undetectable. This is most commonly seen with disease-modifying treatments like pegylated interferons, not phlebotomy or hydroxyurea alone. Results vary significantly between patients, and remission is not guaranteed.
What is the difference between hematological and molecular remission in PV?
Hematological remission means your blood counts have returned to normal range and symptoms have resolved. Molecular remission refers to a measurable reduction in the JAK2 mutation driving your PV. Complete molecular remission, the deepest response currently measurable, means the mutation is no longer detectable in blood tests. It is the goal of disease-modifying therapies like pegylated interferons. You can achieve hematological remission without achieving molecular remission.
What treatments can lead to PV remission?
Pegylated interferons, including Pegasys and Besremi, are most associated with deep molecular responses in PV. Research from Dr. Hasselbalch’s team has also shown promising results combining pegylated interferon with ruxolitinib (Jakafi). Talk to an MPN specialist about whether these options fit your situation.
Is PV remission the same as being cured?
No. There is currently no widely accepted cure for polycythemia vera. Allogeneic stem cell transplant is potentially curative but is rarely used in PV because the risks of transplant generally outweigh the benefits; it is more commonly considered for advanced disease or PV that has progressed to myelofibrosis. Complete molecular remission means the JAK2 mutation driving PV is no longer detectable by current testing methods. Most hematologists avoid the word “cure” because the disease could return. Patients in remission continue regular monitoring.
Can phlebotomy lead to PV remission?
No. Phlebotomy manages hematocrit and reduces clotting risk, but it does not target the underlying JAK2-driven disease. If your treatment plan is phlebotomy only, ask your hematologist about disease-modifying options.
How long does it take to achieve PV remission?
It varies. In my case, it took two years on Pegasys followed by five years on combination therapy, seven years total. Some patients respond faster. Some achieve partial rather than complete remission. Consistent treatment and regular monitoring with your hematologist are key.
Medical Disclaimer
This article reflects my personal experience as a patient diagnosed with polycythemia vera in 2009 and is supported by peer-reviewed research and clinical trial data cited above. The content is for educational and patient advocacy purposes. It is not medical advice and is not a substitute for consultation with a qualified hematologist or MPN specialist. Treatment decisions should always be made in partnership with your healthcare team. PV Reporter and MPN Cancer Connection do not endorse specific treatments, medications, or pharmaceutical companies.
About the Author
David Wallace is a polycythemia vera patient advocate, writer, and the founder of PV Reporter and MPN Cancer Connection. Since launching PV Reporter in 2013, he has built one of the most comprehensive patient resource hubs for myeloproliferative neoplasms, including a doctor-vetted MPN specialist locator and a free clinical trial finder. David attends the American Society of Hematology annual meeting with press credentials and writes about emerging MPN research from the patient perspective.
Diagnosed with PV in May 2009 and now in complete molecular remission, his advocacy work has supported MPN patients and caregivers around the world.
Read David’s full bio at PV Reporter
