A follow up to my post about switching from hydroxyurea to interferon. Questions about switching to besremi or anagrelide.

[Island-Lady]

I have ET jak 2 positive and can no longer tolerate hydroxyurea. I had a phone consultation with my hematologist yesterday and asked him about switching from hydroxyurea to interferon. I really appreciated peoples replies about their experiences switching from hydroxyurea to interferon. My hematologist is willing to prescribe whatever I want him to, but he wanted me to look into besremi and also anagrelide. I don’t think he has worked with interferon for quite some time and considered it an older medication. Again he is very open and a good listener and made it very clear that he will give me whatever I want. So now my question is if anyone has experience moving from hydroxyurea to either besremi or anagrelide and what were your experiences? I also wonder if anyone who has been using interferon has gone into remission. Thank you for reading my post😊

[StreetPastor]

I was on Anagrelide for many years as I couldn’t tolerate Hydroxy. There has been a paper produced to show that Anagrelide does in fact cause a higher transfer to MF which is what happened to me.

Thankfully the transfer was caught quick enough and after being on Ruxolitinib for a few years, while having a bone marrow biopsy for possible stem cell treatment it was discovered that the MF had regressed back to stage 2 ET 🎉🙏🏼🙌🏼

[Island-Lady in reply to StreetPastor]

Thank you so much for your reply, that is really good to know. I wish you the very best!

[Ianjame]

clinicaltrials.gov/ct2/show...

[Island-Lady in reply to Ianjame]

Thank you so much for that link it was really helpful.😊

[StreetPastor]

Ditto 😃

[Orangeboykitty]

I have PV and was on Anagrelide for about a year but it allowed my spleen to enlarge (it only works on platelets) so the doctor switched me to Jakafi to shrink my spleen quickly. For a little while it was great...until my PV symptoms returned. Am now on Besremi and am very pleased with it. Bone pain disappeared as well as the numbness I was experiencing in my fingertips. My numbers have been well controlled on a minimal dose of 50mcg/2 weeks.

[Island-Lady in reply to Orangeboykitty]

Thank you for your reply and I am so glad that you found something that is working for you😊

[ts75]

I have been on anagrelide for a little more than a year now. Had some side effects in the beginnings (terrible headache a few days and heart palpitations for about 2-3 weeks - had ecg done a couple of times to check all okay). After that it’s been great. I have ET and all (!) my numbers are normal now (for past 5 months). Platelets came down fast! BUT I’m only on anagrelide because I’m travelling for two years and will go on interferon when I return. My doctor says (and I agree) that it shows better promise of not progressing etc. So - unless you’re at an age where that aspect matters less, I would do some kind of interferon/Besremi! Hope that helps!

[hunter5582]

I was also unable to tolerate hydroxyurea. I have found Pegasys and Besremi much easier to tolerate and more effective for treating PV (with thrombocytosis). The Pegasys brought the platelets to within reference range within about 8 weeks.

Since you are in the USA and have ET you will likely find Pegasys much easier to get authorized than Besremi. Besremi is only FDA approved for PV. While Pegasys is off-label for ET, it costs about 1/3 of what Besremi costs. ($55,000 vs $180,000 / year). Anagrelide costs between $675-$1,100 / year. I think you can guess which med the insurance company will prefer. Do be prepared to file an appeal if you get a denial.

I cannot speak to any experience with anagrelide but can say that the interferons have been more effective and easier to tolerate than hydroxyurea for me. I hope you have the same experience if you decide to move forward with this option.

[Island-Lady in reply to hunter5582]

I am trying to understand …… for essential thrombocytosis Jack 2 positive, it looks like there are different interferons. Can you or someone else please explain to me the difference so that I know what I am asking my oncologist for. Sounds like he has not been using this for a long time. There are no longer any MPMs specialists in Hawaii and my oncologist is willing to work with me and I do feel very good about him, as he understands that quality of life is what is important to me. Also is besremi for essential thrombocytosis? When I looked it up I only found the information on it for PV

[EPguy in reply to Island-Lady]

There are two interferons (INF) in use these days for MPN, Pegasys (PEG) and Besremi. They are similar, both are Inteferon-alpha. There are differences in their microscopic features but for our purpose they are similar ( but see below) .

The difference in the US is insurance. Besremi is FDA approved for PV so getting insurance approval if you have PV is usually not hard. If you have ET insurance will be less willing to approve since FDA didn't approve it for that (yet, there is a trial right now to get that approval, but likely not till 2024 in the best case)

It's sort of strange, but since Pegasys is not FDA approved for any specific MPN, it can be easier to get insurance approval for ET (as Hunter notes, PEG is a lot cheaper.)

Besremi is supposed to be easier to tolerate with small differences it has from PEG. And some members here have had better results with one or the other of these two INFs, so they are actually different in some ways.

But these differences should not be a worry, you should feel comfortable asking Dr about either INF, and taking the one that you agree on and that your insurance will approve.

[Island-Lady in reply to EPguy]

Thank you so much. Your explanation made it very clear and I appreciate that

[hunter5582 in reply to Island-Lady]

To add to what EPguy summed up, the two IFNs are very similar. The biggest difference is really cost and access through insurance. Besremi is in clinical trials for ET in the USA. You may not be able to access the clinical trials in HI, but could inquire if necessary.

Unfortunately, there do not seem to be any MPN Specialists in HI. Since you have a hematologist/oncologist you like, perhaps that doc can reach out for a consult. Or, you can travel to access a MPN Specialist yourself. Sometimes it is worth the trip.

All the best.

[Island-Lady in reply to hunter5582]

That is very helpful. Wishing you the best.

[catkinspolymer]

I think Hu is still working for me , but platlets have increase slightly despite increase dose to 11 X500 mg a week .

all the best Town cryer

[Island-Lady in reply to catkinspolymer]

I am glad it’s still working for you and I wish you the best!