Advice about Hydroxycarbamide/ Anagrelide please

[Blonde25]

Hi everyone

I've not posted for a while .

I was diagnosed with PV in December 2022 and I have been taking peg interferon since February this year.

At my last review on the 8th December my HB 15.8 HC 0.523 was still 0.523 white cell 8.1 MCV 88 platelets 300 neutrophils 4.67 . I've been for another venesection but they won't review me until the 19th January 2024.

I have been taking 135 micro of interferon every two weeks with a 90 dose on the other week.

The consultant asked me to increase to 135 micro every week. I'm worried because he said I'm being resistant to the interferon and only 10% of people don't respond to interferon at all.

He said they may need to overlap with hydroxycarbamide or Anagrelide .

Has anyone else not responded to interferon ?

I don't want to take hydroxycarbamide because I'm scared of the side effects and I really am not good with tablets.

I'm hopeful I will respond to the peg but how long should I give it to start to work.

Could I ask them to switch to Besremi ?

Any advice would be appreciated.

[Hopetohelp]

mine took 2 years to really start kicking in but it is working very well now. Probably not what you wanted to hear though. They wanted to up my dose from 65 to 90 which I tried and it didn’t suit me so we stuck at the slow and steady 65. They warned me about the risks I was taking with higher platelets but I explained I was aware and quality of life more important to me than quantity. We are all different though in our views and we know our own bodies. I had the option of including hydroxy with the peg so you don’t have to take one or the other, you can take both. Best speak to your haematologist as other blood figures like RbC might play a part in their decision for you. Hope you get it sorted and good luck

[Blonde25 in reply to Hopetohelp]

Thank you for your reply, I will ask when I have my review on the 19 Jan

Best wishes

[hunter5582]

As you will hear from others, some people do take longer to respond to the interferons. If Besremi is available, it would be on option to switch. Theoretically, Besremi is easier to tolerate if you need higher doses. Practically, I did not find any difference in the side effects between Pegasys and Besremi.

You do have multiple options for a combined approach should more than one intervention be needed. Hydroxyurea would reduce all three blood cell lines. Anagrelide would reduce platelets, Venesections would reduce red blood cells. In order to make a decision, you will need to review your treatment goals. 1) What treatment targets are you using and why? What is your history of thrombosis/hemorrhage? What are your actual risks? What are your secondary symptoms? 2) What is your risk tolerance? What adverse effects have you experienced? What risks are you unwilling to take? Which potential adverse effects do you find intolerable? 3) What are your treatment preferences? Do you prefer immune modulating, JAK-inhibition, chemotherapy, or other options? Would you rather avoid medications and opt for venesections as a strategy? Noting that most options are oral medications, is needing to swallow a capsule or tablet prohibitive or simply unwanted.

4) Finally, what are all of your options, including clinical trials? Once you know all of your options, you can compare them vis-a-vis your treatment goals, risk tolerance, and treatment preferences.

This is a conversation to have with your MPN care team. Suggest also getting a second opinion if the answer does not appear to be clear, or perhaps even if it does appear clear. Your comfort and confidence in your decision matters.

Wishing you all the best as you move forward.

[Blonde25 in reply to hunter5582]

Thank you hunter for your very helpful response. I will consider all of what you have suggested. I haven't had any blood clots or had a history of blood clots . My heart and general health is ok . I just can be fatigued.

I have PV and it's the HC that's not being controlled with interferon currently.

I've been having a venesection every 6 weeks to reduce the red blood cells.

They suggested me using the hydroxycarbamide but I'm not sure , the side effects can be horrible and I don't want to lose my hair, tablets upset my stomach and it suggest anti sickness medication if this happens. It can also cause weight gain ?

Besermi seems a better option for me but not sure if the NHS will provide this medication.

I will ask them at my next review along with any clinical trials .

[hunter5582 in reply to Blonde25]

There is also the option for Jakavi (ruxolitinib), which I believe was approved by the NHS for PV. There are more choices than hydroxycarbamide or anagrelide. You can also continue to use venesections to control the erythrocytosis if you find the risk profile to be preferable.

Wishing you all the best.

[Anag]

We’ve been making a switch from Anagrelide to Besremi, which is also an interferon. I have ET Calr which takes longer for interferon to work than with PV.

We reduce the Anagrelide slowly. The Anagrelide heart pounding was getting worse after 5 years and HU gave me terrible neurological symptoms. I can’t tolerate either so the health insurance here in Austria accepted to pay Besremi, which is horribly expensive (being a relatively new drug on the market). It worked really slowly at first, then I was able to reduce a bit on Anagrelide again. In August, after 8 months, Besremi kicked in and worked well, but the side effects also kicked in. Debilitating Pain in my extremities. Shoulders, hands and feet.

I eventually stopped Besremi cold turkey 7 weeks ago and continued with only 1 anagrelide daily. My side effects have subsided except for my left foot. Last week, my platelets started to climb again. I’m contemplating to restart with a much lower dosage or try Pegasus, which you are probably taking.

[Solebury]

I’ve been on peginterferon for about 2 1/2 yrs. The drug did take awhile to actually bring down my platelets, 9-10 months. My hematologist encouraged me to stick with it (pun intended😉) as the hydrea was losing its efficacy and side effects had worsened. Was diagnosed with ET 16 yrs ago and was on Hydrea until switching to peg. Now, at 68, I’ve progressed to PV and keeping my hematocrit and red and white blood cells in line has become a challenge and have phlebotomy's about every 4-6 weeks. Monthly bloodwork helps keep close tabs on what’s happening.

[Wyebird]

hi, I have et. I responded to 90 units of interferon plus 16 hydroxi a week straight away.

Week 2 just interferon.

2 yrs later I’ve just switched to 90 units every 28 days. Only just started so won’t know for a few months.

I did meet someone who could only tolerate a small dose of Peg so she was on peg and hydroxi. I know PV is completely different and I can’t advise.

Sending you best wishes

[Artelu]

Hello, Interferon may take a bit longer to work. You may want to wait until your next visit. Your numbers don't seem alarming. I have been on hydroxy for 12 years. I did well on it for 9 years then hematocrit and platelets started to climb and higher dose made me too ill. Oncologists have tried to switch me. First, to Jakafi but I suffered severe adverse effects and then to Besremi, which placed me in hospital with brain swelling. Consequently, I'm back on hydroxy and phlebotomies every 6 weeks because my platelets range between 600-1.2 million and hematocrit over 42 gives me severe symptoms and TIAs. Hoping for some new miracle drug.