I had been on 2000mgm/day for 2 1/2 years, required to get counts down after I transformed from ET to PV in 2023. A couple of months ago I got my hematologist to begin reducing dosage, and I’m down 1000mgm a week. Counts have gone up a bit, doing monthly labs, and hopefully things will stabilize at the reduced dosage. Which may help the side effects. I remind myself this is an oral chemotherapy, and it has kept me alive since 2001.

I take Jakafi first my PV it has less side affects than HU

Sorry to hear about the issues with HU. Unfortunately, HU is a toxic medication with potential adverse effects like oral ulcers, and asthenia/dyspnea. It sounds like you may be intolerant of and refractory to HU.

I experienced large/painful bleeding oral ulcers, canker sores, thrush, severe glossitis, and constipation on HU. While HU reduced platelet count, it did little for the erythrocytosis. I had to do venesections every 3 weeks. Nothing helped with the adverse effects, which persisted even with dosing reduced to 500mg every other day. The side effects took about 3 months to resolve after I discontinued the HU. Fortunately, I have done better on the interferons, Pegasys then Besremi. The IFNs have been more effective and much easier to tolerate.

Pain at the leave you describe is not an acceptable side effect. It is unlikely the dentist can do much to help other than suggest oral anesthetics. The significant loss in quality of life due to the fatigue side effect is also not acceptable. Quality of life is just as important as preventing thrombosis.

Assertive patients receive higher quality care. Passive patients do not. Suggest it is time to be clear that the current treatment plan outcome is not acceptable. Fortunately, there are other options. Pegasys is recognized in treatment guidelines as the another first-line treatment option for ET/PV. It is your prerogative to pursue another option if you believe it is in your best interests.

Wishing you success moving forward.

I take HU for PV. When I started it was 1 capsule once a day. I was exhausted. I was taking the dose in the morning but switched to the evening. That switch made a huge difference. My tiredness was significantly reduced. I recently had to increase to 3 extra capsules a week. I was surprised at how well I adjusted. I’m up to 1000 mg/day M-F and 500 mg, Sat and Sun.

Hello Carol. I appear to be treading the same path as yourself, I also have an infection I just can't shake off and I'm beginning to feel I could sleep the clock round.
I think your right and a month is too long, actually five weeks in this case because of being away.
If my symptoms get any worse I'm going to be knocking on the door. If you don't ask, you don't get.
Thanks for you wishes.