Peginterferon alfa 2a or Hydroxycarbamide for PV?

[Lyndjs]

My consultant has said I need to start treatment for PV and has asked me to choose between them. I'd really welcome any recommendations. I am new to this site, apologies uf this has been asked before.

[hunter5582]

Hello and welcome. Glad you found your way here. this is a great place to find information and support.

We are all different in our PV treatment needs. We are all different in how we respond to the treatment options for PV. There are options starting with venesection + aspirin, cytoreductive agents like hydroxycarbamide and the interferons. Jakavi was also recently approved in the UK for PV, so that is another option.

The first step in the decision making is to determine what your treatment goals, risk tolerance, and treatment preferences will be. You will need to understand treatment needs and all of your treatment options. Once you have all of the information, you can make a decision based on your treatment preference.

The first thing to determine is whether cytoreduction is indicated in your case. Assuming you agree that it is, then what is the goal? The typical goal for PV is to control erythrocytosis, indicated by HCT<45% (males) or HCT<42/43% (females). If thrmbosutosis or leukocytosis are present, they may be factors but it is the erythrocytosis that is the primary risk factor in PV.

The choice between hydroxycarbamide or Pegasys is a common starting point when cytoreduction is indicated. It is important to understand what each of these medication is, how they work, what the benefits/risks of each are. this information is easy to find. You can start with these links for hydroxycarbamide (AKA hydroxyurea). Use the same sources to look up Pegasys.

drugs.com/monograph/hydroxy...

cancerresearchuk.org/about-...

epocrates.com/online/drugs/...

The short version is the hydroxyurea is chemotherapy, an antimetabolite (cytotoxin) that works by altering DNA activity in hematopoietic stem cells and other cells in your body. Pegasys is an immune modulating drug that has antiproliferative effects in the bone marrow. Both drugs are cytoreductive but work in different ways. Both have contraindications/cautions and risks, but the lists are different.

There is a difference in the putative benefits of the two drugs. Note this is an area of active debate in the MPN community. The interferons appear to more selectively target the JAK2 mutated hematopoietic stem cells. The IFNs can reduce allele burden and are considered to be potentially disease modifying. HU does not offer this potential benefit. You will have to decide for yourself whether this matters to you.

It is important to understand that we all react differently to these medications. You cannot predict how you will react based on how others react. I did not tolerate HU and it was ineffective for me. I have done much better on the IFNs. I started on Pegasys them switched to Besremi. I have achieved a complete hematologic response on low doses of the IFNs. Side effects have been minimal. In 18 months, my JAK2 allele burden reduced from 38% to 9%. My quality of life is better now than it was 10 years ago.

Clearly, the IFNs are the right choice for me. That does not predict what the right choice for you will be. You will have to do your own analysis then make a decision about what you want to try. The good news is that if you try something that does not work, you can always change the plan. The only way to know what is the right choice is to try.

Wishing you all the best as you move forward.

[Lyndjs in reply to hunter5582]

Thank you as you say lots to think about. Thank you for your detailed reply, much appreciated, and thanks for sharing your personal experience.So kind of you x

[AndyT]

I have ET rather than PV but was given the same choice when I needed to start cytoreductive treatment 8 years ago, after 12 years on aspirin only.

I wasn’t sure which to go for but opted to try Pegasys and have been very happy with it. It brought my blood counts under control quickly, with no significant side effects and I am now just on a small maintenance dose of 45mcg every four weeks, which is very easy and convenient.

Hunter has already provided a very comprehensive answer which will hopefully give you the further information resources you need to make your decision.

The good news is that whichever medication you choose isn’t a permanent commitment - if you find it’s not working for you the option should be there to switch in the future - maybe confirm that with your doctor before you start on either of them.

[Lyndjs in reply to AndyT]

Thank you Andy,I really appreciate you sharing your personal experience with me. Yes, I've been told I can switch.

[Hopetohelp]

I am on Pegasys and have no regrets. If you are in uk you are lucky to be offered peg as first choice as you usually have to ask for it as it is more expensive than hydroxy. Peg has been slow acting for me but steady Eddie and my bloods are good. Hardly any side effects at 65mcg. If you decide on peg start on low dose of 45mcg to let your body get used to it. Drink lots of water too. I chose peg due to the fact it can put you in remission if you are lucky. Always hope at the end of the tunnel. We are all here to answer any questions you may have. Feel free to ask

[Lyndjs in reply to Hopetohelp]

Hi ,

Thank you for sharing your experience. You're all so lovely on here and really helping. It's so good to have people, like you to chat with. Yes I'm in the UK.

One minute I'm thinking to go one way and the next, the other 😅

Thanks again for your help & support x

[originalmyndzi in reply to Lyndjs]

Hi Lyndjs....I felt compelled to add that I completely understand your dilemma. I had to make the choice between HU & PEG about 3 1/2 months ago and was changing my mind right up to the day of my appointment. I'm a 54yo F from Canada....diagnosed in May this year.

In the end I decided on PEG as it felt like a more proactive vs reactive approach to treatment. I'm still young at 54, healthy and with no thrombotic history so for me taking a more aggressive approach to trying to change trajectory by reducing allele burden made sense. I was concerned about some of the potential risks ie. activation of predisposed mood or auto-immune disorders as I have a significant familial history with both, but to this point I've experienced no ill effects at all.

I'm still waiting for my numbers to stabilize, but I've only been on weekly doses of 45 units since mid-September (bi-weekly from July-Sept), but I'm hopeful the "creep" will stop soon and I can avoid further phlebotomies as THEY have been kicking my butt (ferritin & iron values both down to 5).

Good luck with your journey!

[Lyndjs in reply to originalmyndzi]

Thank you for sharing. I've been told treatment is weekly and will slowly increase to 90. Your experience is interesting so I'll be asking more questions. So good to hear your feeling OK on peg. That is my biggest fear. I'm 60, in the UK and like you, have no problems, symptoms or personal history bit my platelets yoyo and are now 852

I'd love to hear how things are going for you. Keep in touch.

[originalmyndzi in reply to Hopetohelp]

Hi Hopetohelp,

I responded to Lyndjs as well below, but could I ask you to clarify your "slow acting/steady Eddie" comment. I've been taking 45 units of Pegasys since July, every 2nd week until mid September and weekly since then and my numbers are still creeping up. How long did you take it before you saw stabilization?

Thanks

Michelle

[ainslie]

Youve had some good answers already, if you go to MPN Voice website mpnvoice.org.uk/about-mpns/...

It gives a pretty balanced view on the various treatments written by Clair Harrison and team, a must read.

In addition to the two drugs you mention there is also Ruxolitinib which also has been shown to lower allele burden although not as quickly as Peg for some.

[Lyndjs in reply to ainslie]

Thank you Ainslie, I'll take a look. So kind of you to share.

[Scarlett500]

Hi. I have ET and opted for pegasys after reading about the side effects of hydroxy and also i think pegasys can stop progression of the disease. I am only on 45mcg a week which has brought my platelets down to below 600 which is the target my haematologist was aiming for. I feel less fatigued but often feel a bit ill on the day after the injection but am working at home so can have a lie down if needed.

Good luck

Jeanettr

[Lyndjs in reply to Scarlett500]

Hi Scarlett,

Thank you for sharing your personal experience. I blown away by all the support/ help everyone is giving. So grateful.

[PhysAssist]

Hi Lyndis,

It might be helpful to know more about your current status, but it's not really necessary because all the respondents above have given you very balanced and wholly appropriate answers.

As for myself, I was started on HU, when I was diagnosed with JAK2+ PV in 6/22.

My initial Heme/Onc MD prescribed it, because she had only limited experience with prescribing interferon, and then only with the earliest and most adverse-effect-causing ones, which had been used in the early treatments for leukemia.

I developed side-effects from HU right from the start [as in within a week of starting it], as well as concerns about it increasing my risk of skin cancer because of my family history, and I have since been diagnosed with a basal cell carcinoma [which is considered unlikely to have be related to my having taken HU, since I was only on it for 4-5 months.

As a result of my concern [and side-effects], I found another Heme/Onc MD who specializes in MPNs relatively nearby [about an hour away in good weather] who agreed to act as our consultant in starting and managing me on Ropeginterferon [Besremi].

I'm doing well now, after about a year on Besremi, involving very few [3-4 overall] phlebotomies, and experiencing virtually no side-effects, even though I'm at the maximum available/recommended dosage.

My experiences lead to me asking you whether your consultant is an MPN-specialist or more of a general hematology/oncology MD?

If you are interested in seeking advice from an expert, you might look for one near you on here:

mpnforum.com/list-hem./

Best regards and good luck!

PA

[Lyndjs in reply to PhysAssist]

Very interesting. Thank you for sharing. I'll take a look. My haematologist is fab and has been very supportive but I will check this out as it's something, I'd not considered.

Thank you for sharing.

[PhysAssist in reply to Lyndjs]

Hi Lyndjs,

I don't know if I was as clear as LoooLoo in my post, so to clarify- I would also endorse Ropeginterferon/Besremi without any hesitation.

Best,

PA

[Lyndjs in reply to PhysAssist]

Thank you. I've only been offered peginterferon or Hydroxycarbamide, at this point. Not heard of the ones you've mentioned but I'll investigate. Thank you

[PhysAssist in reply to Lyndjs]

Hi Lyndjs,

Ropeginterferon is the generic name for Besremi. It's very similar to Pegasys/peginterferon, except as noted here:

"How Does Besremi Compare to Other Treatments?

Although ropeginterferon alfa-2b (Besremi) is the first interferon therapy approved by the FDA for treatment of PV, it’s not the first interferon therapy available to patients with PV. For years, patients with PV have had access to a similar drug, prescribed off-label: Peginterferon alfa-2a (Pegasys).

Peginterferon alfa-2a and ropeginterferon alfa-2b are nearly identical, with one major difference: A change in ropeginterferon’s chemical structure allows it to last longer in the bloodstream, so that patients don’t have to dose themselves as often. While patients need to inject themselves with peginterferon on a weekly basis, ropeginterferon only needs to be injected once every two weeks, then once per month during long-term maintenance. “The idea is that we can dose it even less often, with even fewer side effects, and yet get the same efficacy,” Dr. Gerds said."

from: patientpower.info/myeloprol...

I don't know if Besremi is approved for your location, but if I was offered a choice between either one of them and HU, I'd certainly pick the interferon.

Best,

PA

[Lyndjs in reply to PhysAssist]

Thank you. Not sure it's available here but I can ask. I am thinking to go peg.

Really appreciate your support

[PhysAssist in reply to Lyndjs]

de nada!

That's why we're all here...

Give and get.

Best,

PA

[Looolooo]

Peg all day long.

[Lyndjs in reply to Looolooo]

Thank you x

[Crossefield]

Hi, PV here. I'll also echo the views of many here. It is a very personal decision. I'm probably not alone having decided my preference well before any options were suggested. I'm only 55 but suffer bouts of fatigue, brain fog etc. I didn't expect anything other than aspirin/venesection and then Hydroxy around 60. So when recently given a chance/choice to trial Pegasys or Hydroxy to see if it helps with symptoms I chose Pegasys. I'm only seven weeks in so it's early days. Plus, I also got covid just after starting which has clouded progress. I was scared about self injecting but after the initial demonstration being pain free it's turns out not be that big of a deal. As per others it was an easy choice when offered Pegasys in the UK. Hopefully, I'll be one of the lucky members who get their energies and mental focus back.

[Lyndjs in reply to Crossefield]

Thank you for sharing I'm 60 now. Diagnosed at 58 and offered Hydroxycarbamide but was able to watch & wait so decide to do this. I knew treatment would have to start but then getting a choice threw me.

Thank you for sharing. I hope you're one of the lucky ones too

[monarch5000]

There are a couple major differences between Hydroxyurea, Ruxolitinib (Jakafi) and interferon (Pegasys & Besremi).

1) Hydroxyurea and Jakafi never suppress the ET & PV disease well enough to allow some patients - like AndyT in this thread - to need to take "only small [disease] maintenance dose of it every four weeks".

2) Jakafi doesn't have interferons track record of maintaining it's effectiveness over multi-decade stretches time. Instead, quite a few patients taking Jakafi become resistant to its beneficial effects within 3-8 years.