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September 4, 2024
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Answer Summary

Members shared varied experiences with long-term polycythemia vera management, with one member successfully managing symptoms for 20 years on... Read more

Members shared varied experiences with long-term polycythemia vera management, with one member successfully managing symptoms for 20 years on just phlebotomy and aspirin, while others described transitioning to medications like Besremi, Jakafi, or hydroxyurea as their disease progressed or spleen enlarged. Several members highlighted important considerations including phlebotomy-induced iron deficiency causing fatigue and cognitive issues, concerns about hydroxyurea increasing skin cancer risk (particularly squamous and basal cell rather than melanoma), and positive experiences with Besremi reducing JAK2 allele burden and improving quality of life with manageable side effects. A recurring theme was the critical importance of seeing an MPN specialist rather than a general hematologist, as specialists often make significant treatment adjustments like raising target hematocrit levels to 45 percent and switching medications to better address individual complications and long-term disease management.

A myMPNteam Member

At age 72 the protocol is for cytoreduction using medications. Not all follow this protocol but most do.

The two first-line treatment options are hydroxyurea and Besremi (or Pegasys). Jakafi is another option but many insurance formularies require failing on hydroxyurea first. Besremi/Pegasys and Jakafi appear to have the benefit of being disease modifying, possibly reducing the risk of progression into Myelofibrosis. Hydroxyurea does not offer this benefit but is faster acting.

While phlebotomy can be effective in controlling erythrocytosis, it can have adverse effects due to the long-term impact of phlebotomy-induced iron deficiency. These adverse effects can be significant. They can include fatigue, cognitive dysfunction (memory/concentration loss), cold-intolerance, alopecia and more.

I was intolerant and refractory to hydroxyurea. Phlebotomy-induced iron deficiency symptoms were worse than the PV symptoms. I have done much better on the interferons. Started on Pegasys then switched to Besremi. My quality of life has improved. I feel better now than I did 10 years ago. I am maintaining a complete hematologic response and my JAK2 allele burden has dropped from 38% to 10%. Adverse effects have been minimal compared to other treatment options and the side effects are well controlled. Zyrtec controls the itching/rashes and Milk Thistle Extract reduces the elevated LFTs. I am very pleased with my response to Besremi.

Wishing you success moving forward.

September 4, 2024
A myMPNteam Member

I have been on phlebotomy and aspirin for over 15 years with perfect quality of Life.
Then my spleen grow too much and I had to take HU, for 12 years, now am on Jakavi and very happy.

October 8, 2024
A myMPNteam Member

My new, MPN specialist, immediately raised to 45 from 42 my requisite HCT number before any phleb. No hydroxy, will start Besremi asap. Remain on low dose aspirin.

October 7, 2024
A myMPNteam Member

Just an update: today I was advised I now have a 2nd type of skin cancer: a basil cell spot on my shin. Being in tune with one’s body is so important. Both my skin cancer spots were dismissed by a dermatologist for two years. Finally, I pushed for biopsies…Thankfully, both have been caught at early stages.

September 23, 2024
A myMPNteam Member

Thank you for your responses. So helpful. The warned-of side effects for Besremi and Jakafi are frightening, but so were they for Hydroxyurea, which I can’t take as I’ve already had my first bout of skin cancer and looking at a possible 2nd one tomorrow. My hematologist retired and did not suggest either of the interferons. I’ll see what his replacement says and I do see an MPN specialist at U of Mich later this month. Thanks again.

September 5, 2024

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