Treatment options

[Swim360]

Hi everyone, I'm just over a year into my treatment for PV. Hydroxycarbamide 500mg weekdays 1000mg weekends with daily 75mg aspirin. I have have monthly blood tests with the aim of keeping haematocrit to below 0.45. Generally up 0.47 is ok anything above I have a venesection. hen I was first diagnosed my haematocrit was 0.72. The treatment us working but hydroxycarbamide is not a nice drug.

There is an option to go onto interferon or possibly the Mithridate trial, should I change?

[hunter5582]

We all react differently to the drugs used to treat PV. I was not able to tolerate hydroxyurea and it was ineffective for me, requiring venesections every three weeks. I experienced HU toxicity even at very low doses. Over time, the venesection-induced iron deficiency symptoms were worse than the PV symptoms. I have done much better on the interferons. I started on Pegasys then switched to Besremi. I am maintaining a complete hematologic response on a low dose of Besremi (150mcg) and side effects have been minimal. My JAK2 allele burden has dropped from 38% to 9% in 18 months. My quality of life has improved significantly. I feel better now than I did 10 years ago, and way better than a few years ago when i was so iron-deficient. My only regret is that I waited as long as I did to start on the interferons.

If you are finding the adverse effects associated with HU are unacceptable, switching to another option is a logical choice. We are fortunate to have other options and more in development.

Wishing you all the best as you move forward.

[Swim360 in reply to hunter5582]

thanks as always Hunter, I am only suffering fatigue from time to time but concerned regarding long term side effects, skin cancer, I’ll have good chat with the consultant, thanks Brian

[Hopetohelp]

I can recommend Pegasys. It suits some and not others. Might be worth a try. Good luck

[Swim360 in reply to Hopetohelp]

thanks Hopetohelp

[monarch5000]

Another vote for Pegasys interferon. A couple years ago the Silver MPN center in New York City published the following findings based on a total of 470 PV patients they treated over a 25+ year period: 20 years after diagnosis:

95% of their PV patients who had been treated with interferon were still alive and 15% of them had progressed to post PV myelofibrosis

63% of their PV patients who had been treated with hydroxyurea were still alive and 41% of them had progressed to post PV myelofibrosis

Source: tinyurl.com/544sybph

[Swim360 in reply to monarch5000]

thanks monarch5000they are interesting stats, I’ll will go informed when I speak to the consultant, thanks Brian

[Otterfield]

You don't say whether you have side effects from Hydroxycarbamide, but if you do, it's probably worth discussing a change with your haematologist. Personally I didn't like being on Pegasys as I suffered from aching joints, mainly my knees, which was very painful. My fatigue also increased but that may have been caused by my gradual progression to Myelofibrosis.

[Mirror368 in reply to Otterfield]

hi Otterfield,

Did you stop using Pegasys? If so, what are you taking and is it successful?

Thanks, Eileen

[Otterfield in reply to Mirror368]

It was stopped when I was diagnosed with high risk Myelofibrosis. I was then on Ruxolitinib for nearly two years until my stem cell transplant. For several months afterwards I was on the immunosuppressant drug Cyclosporine, now on monthly Pentamidine via a nebuliser (protection from a particular kind of pneumonia) plus prophylactic Penicillin and Famcyclovir (antiviral).

Sorry this is not very helpful information for PV and ET patients!

[Mirror368 in reply to Otterfield]

Thank you for the information. Best wishes on your continued journey.

Eileen

[Innessant]

I am on similar regime as you. No side effects apart from reduced itching which is wonderful. Why change If it works? Shopping around for drugs seems strange unless you have intolerance.