Rux or Interferon?

[Jomalile]

hi, I am a ET patiënt, but because my hematocrit and hemoglobin rises and I need phlebotomies, I will soon be diagnosed as a PV patiënt also. I am on Anagrelide at the moment but will have to switch medication very soon.I am intolerant to Hydrea. There are two possiblities: or Jakafi (rux) or Besremi. I wonder what would be the best solution. The spleen is not enlarged. I also wonder if there is a counter argument if the doctor wants to give me Jakafi. My preference is rather Besremi, but my hematologist is totally unfamiliar with interferon…

[hunter5582]

Jakafi and Besremi are both valid choices for PV. Most formularies require prior failure on hydroxyurea to access jakafi due to how the label is written. Given that you are taking Anagrelide, I am thinking you have already failed on HU, so perhaps that will not be an issue.

Any hematologist who treats MPNs should be familiar with the interferons. Pegasys/Besremi are well recognized as first line treatment options for PV. They are a preferred treatment option in the NCCN guidelines. If you prefer Besremi, then that is a valid reason to give it primary consideration. The decision making process should involve checking for contraindications, considering your preferred treatment goals and risk tolerance, and deciding between two valid choices based on your treatment preferences. If your hematologist has a valid medical rationale based on your profile, then that should be explained and considered. Being unfamiliar with using the interferons to treat MPNs would not be a valid concern. That would be a reason to seek care elsewhere. Besremi and Jakafi both require a provider who knows how to manage MPN patients using these treatments. It is essential to quality care.

Wishing you success moving forward.

[Jomalile in reply to hunter5582]

thank you hunter5582 for your reply. In my country hematologists are not used working with interferon because Pegasys was not reimbursed. Now there is Besremi, they have to learn to treat patients with Besremi, but have no experience. Question: does Jakafi lowers the platelets?

[hunter5582 in reply to Jomalile]

Yes. Jakafi is a cytoreductive mediation that will lower platelets, erythrocytes, and leukocytes. It works differently than anagrelide, hydroxyurea or the interferons. Jakafi inhibits the JAK-STAT pathway that is dysregulated by the JAK2 mutation. The JAK-inhibitors slow down the production of blood cells by directly inhibiting the JAK-STAT pathway.

I am not sure what country you are from. Has Jakafi been covered in the past when Pegasys was not? While Pegasys is expensive, Jakafi is considerably more expensive. Most healthcare systems would rather pay for Pegasys.

Hopefully, your hematologist will be willing to learn about Besremi if it will be covered and it is your preference. I have been using Besremi very successfully to treat PV. It is more effective and easier to tolerate than the other treatments I have used (hydroxyurea and venesections). The Besremi side effects have been manageable and the benefits clear (maintaining hematologic response, decreased JAK2 allele burden).

Wishing you all the best.

[ainslie in reply to Jomalile]

Jakafi will usually lower platelets but often it can increase them temporarily, mine rose from 600 to about 740 for 6 weeks but slowly fell to 200.

Interferons or Jakafi are good options , on the whole Jakafi is easy to tolerate for the majority but at time of writing there is more data on Inf on the potential benefits to the bone marrow for a subset, mainly because Inf has been around longer, although that data for Jakafi is rising

[Jomalile in reply to ainslie]

Thanks Ainslie,

A new medicin scares me a bit, I think that is normal. And I suppose that the side effects depends from person to person.

I wonder, since when do they use Jakafi for PV?

[ainslie in reply to Jomalile]

Starting meds or changing is a bit concerning for most of us, but our MPN's are powerful and need powerful control. If you try any of the drugs and dont like them then presumably you can stop and try the other one. I have been on Rux for 7 years, I tried Peg but it didnt agree with me although some do very well on it. Rux has been great for me , all counts normal , no symptoms or side effects, BMB from 2023 is better than the one in 2017 before I started Rux, I dont know what my starting allele burden was but last year it was 21.6 and this year its 14.3, no other mutations. I think Rux has been used for MF from before 2008 and for PV since around 2014 (not sure how accurate those dates are). The interferons have been around for ever so more data but Rux is getting some very good reports recently and I would say easier to tolerate. There is a trial going on testing Rux for first line therapy for PV so that should be interesting Anag may be good for some but there are some concerns around it , I dont know much about Anag but I heard there can be heart issues and of course if you have PV its not going to do anything for red cells but I am sure you already know that.

[Jomalile in reply to ainslie]

Yes indeed, Anag was ( in minimum dose I could endure, more is terrible) ok as an ET patiënt. But not with what happens now in my bonemarrow not enough. I am pleased to hear that Rux has been great for you. I am a little afraid that when Rux will be my medicin I will gain some weight. It is a struggle to maintain or lower my weight now. I hear this complaint also of other Rux users. That would not make me happy.

[ainslie in reply to Jomalile]

Many gain weight on Rux and I did initially but I think its calorie related, especially poor quality calories such as sugar , refined carbs and alcohol , also exercise. Its the same as for non Rux people but maybe harder , the principal is the same less and better quality calories or more exercise or both. I noticed since cutting down a bottle of wine a week (1000 calories) my weight is even a tad low. Im 72Kg which is the same as when I was diagnosed. I do exercise a bit before each meal and try to eat plenty plenty protein and vegetables at each meal and just enough complex carbs, it seems to work fine.

[Jomalile in reply to ainslie]

Thanks for your answer and advice. I think it is important to know this in advance.

Next week, I will see which medicin the doctors will decide that is the ‘right’ one for me.

[Luthorville]

Jakafi for recent PV doesn’t really happen both because insurance tends not to pick it up at that point and the evidence supporting it is still developing. My Hematologist was opposed to me starting Besremi. Only when I changed doctors was I put on it. With my results my original hematologist has now added over a dozen of his patients. Make sure to be your own advocate and find the right doctor.

[EPguy]

I've been on all 3 meds, HU, IFN and Rux (Jakafi) . Between Rux and Besremi IFN, I describe Rux as "boring" and IFN as "interesting". Rux does its stuff quietly and slowly, IFN for most pts lets you know you have taken it.

Do you have a Jak2 VAF test result? This is a % mutation. Both IFN and Rux can reduce this effectively for many, while IFN may do better for the higher starting values.

Rux has small set of dose options and a right one can be figured out over a long time. So dosing is easy. Rux tends to be better for spleen enlargement and PV itch, but that is not a concern for you

Rux bad stuff: It generally has more sides, the most common is weight gain as you note. I had trouble with excess weight loss so Rux fixed it, now I can decide how much I want to weigh. The old unsatisfying "good diet and exercise" applies if gain is a concern.

Non melanoma skin cancer may be increased risk on Rux, prior use of HU may be relevant here. Regular dermatological checks and sun protection are good.

Shingles risk is increased. It is recommended to get the Shingrix vax before starting. This also applies to all adults over 50 in US guidelines.

Immune suppressive: Rux can increase risk of infection, but it is not a strong immune suppressant.

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IFN is great medicine. So why is there even a discussion vs Rux? For most it has various sides but they are tolerable. But strong intolerance is not unusual. Further its worst case sides are uncommon but dire.

Autoimmune (A-I) : IFN has on the US FDA label a black box warning. It is the only regular MPN med that has this. We see it often enough on this forum to know the risk is happening and is real. If you have a preexisting autoimmune or reason to be at risk for one, IFN requires caution and may be contra indicated. A particular A-I to watch for is Sjogren's, we've seen here several members with this outcome, along with others. Thyroid can also be affected but this is usually easily treatable if it occurs.

Liver: IFN can cause liver injury. But getting regular blood tests will allow checks. Several members have had success with Milk Thistle to keep liver counts controlled.

If your Drs are not familiar with IFN, it requires particular care. They won't be looking for A-I risks nor how to control risk vs dose. Selecting a best dose is one part of its "Interesting" aspect. A bit too much and the risks can accelerate quickly. If an autoimmune event occurs the beneficial long life of Besremi in the body becomes a liability, there is no way to flush it quickly. This was relevant to me. A-I events on IFN can happen suddenly.

The above adverse events are more likely early in IFN use but can occur at any time.

The above in part are my actual experiences, even as I had no A-I history. Also other members' reports.

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Most of us prefer IFN as a 1st option, and if you have no known A-I risk it is a fine option. My suggestion is to use the smallest possible dose that controls blood counts, I likely would have had a better outcome if I had done that. Also do not get any vaccines exactly a week apart.

My MPN specialist recommended Rux over IFN after I was on HU, but was ok with my selection of Bes. But he is no longer offering Rx of inteferon, my experience likely has biased his practice.

[william-Indo]

Regarding to your options, Rux (Jakafi) is reasonable choice right now.

Pegasys is shortage for about a year and you will difficult to get it anywhere.

Cheers

[Jomalile in reply to william-Indo]

Thx for your answer. Pegasys is not an option, but Besremi is. Besremi and Jakafi are both reimbursed and available.