Hi Everyone, I am still fairly new to this website, and am not sure if this has been discussed. Has anyone with PCV stopped the need for phlebotomies since starting Besremi? Also has anyone here had their JAK2 restored to normal?
Are there any other positive results you have experienced? Thank you for your time.
At one point I needed phlebotomies every three weeks while taking hydroxyurea. I was refractory to and intolerant of the HU. I tried phlebotomies-only but found that the long-term adverse effects from the phlebotomy-induced iron deficiency were worse than the PV symptoms. Eventually I started on a low dose of Pegasys then switched to Besremi when it became available. Since then my quality of life has improved. I only need a phlebotomy about once per year, using a low (175mcg) dose of Besremi. Side effects have been minimal, including itching rashes (well controlled by cetirizine), elevation in LFTs (controlled by Milk Thistle Extract), and mild lymphopenia/borderline neutropenia. The lowered leukocytes is a dose-limiting factor. Despite the limited dose, treatment has been very effective, including reducing my JAK2 VAF from 38% to 10%.
Wishing you success moving forward.
Similiar results here, compared to Hunter.
I had regular phlebotomies, but that stopped, once I switched to Besremi.
My low leukocytes are also a dose limiting factor; currently I'm using 60 mcg / three weeks, having a phlebotomy every two years approximately. There are no side effects, except for a dry mouth. Overall I'm doing very well.
All the best and in case any questions come up, just shoot.
I haven’t had a phlebotomy in a year, since I started Besremi. I was very quick to respond to the medication and my CBC results are all in range. I haven’t had my Jak % retested.
I started Besremi 2 years ago. And this May will be 2 years since my last phlebotomy. Same as the others watching wbcs. Currently on 175mcg every 2 weeks, but see doctor at end of the month. Thinking we can reduce to once a month dosing. I did start thyroid medication since starting but other than that no side effects. Feeling great.
Multiple studies indicate that some individuals on Besremi achieve complete hematologic response (CHR) or even full remission, with platelet counts, hematocrit, and other markers well controlled. In certain cases, the allele burden dropped below 1, which is quite remarkable. However, from what I recall, this was a relatively small subset of patients. That said, many others still experienced CHR alongside a reduced allele burden, which also appears to be significantly beneficial.
In my opinion, if a patient can tolerate Besremi without severe side effects—which seems to vary widely, with some experiencing almost none while others struggle—it is absolutely worthwhile. Adjusting to biweekly injections takes some getting used to, but based on what I’ve seen, Besremi meaningfully improves both life expectancy and quality of life. Of course, always consult your specialist, as individual responses vary, but I’m definitely an advocate.
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