I am a PV patient 57 years old diagnosed at age 50 and considered low risk. First five years after diagnosis I was treated with monthly phlebotomy and baby aspirin only. 5 yrs of monthly phlebotomy took its toll and iron deficiency and high platelets led me to besremi which had just been approved. Started besremi about 2 1/2 years ago. Platelets came down to normal but still needing phlebotomy but once every month. Been on maximum dose of 500 mcgs for over a year and still no hct control. No major adverse reactions so far even at max dose but not getting hct control which is the primary goal of the treatment. My qualified MPN specialist whom I trust is recommending the possibility of stopping the besremi and starting jakafi in hopes of hct control with Jakafi. She says that for some reason some patients don’t get hct control with interferons and that we have tried it for over two years with a year on the max dose. I asked about losing the potential allele burden reduction benefits of besremi and she doesn’t place much emphasis on that and says the number one priority is hct control. She also says some patients get allele burden reduction from jakafi. I am curious regarding whether others here have switched to jakafi from interferon or have otherwise taken jakafi as a front line treatment for PV without MF and how it has worked for them. Another concern with jakafi is I’m not sure how long one can take it. Thanks
Switch from Besremi to Jakafi: I am a PV patient... - MPN Voice
Switch from Besremi to Jakafi
Given what you describe, I would not hesitate to switch to Jakafi. Unfortunately, we do not all respond to Besremi or any other treatment option in the same way. It is worth noting that there is emerging evidence that Jakafi can also reduce allele burden. You may find better control of the erythrocytosis and still get the addition benefit of a lower VAF. The only way to know is to try.
Many thanks. That is is how I am leaning. My mpn doc also mentioned an alternative of adding hydroxy to the besremi to see if it would jumpstart control of the erythrocytosis as a combination approach. The jakafi alone sounds to me like a better option. For some reason I just don’t want to try hydroxy if don’t have to. Have read about too many people with bad experiences and since I have the asxl mutation also worry about worsening outcomes caused by the drug and its toxicity.
I think you are making a very reasonable and rationale decision. Sometimes all we can do is make a judgement and monitor how it goes. I would be sure to step up the frequency of monitoring CBC and CMP during the dose titration phase. I am sure your MPN doc will do just that.
I'm one of them. Been on all 3 meds. I got CHR on all but wanted to get away from HU for the benefits you note. Bes didn't end well (see my post "Last Dose") as even 140 was too high a dose for me.
"She says that for some reason some patients don’t get hct control with interferons " we are seeing this in the forum more often than I expected, but it is consistent with the trials. In fact CHR can be lost over time in many studies for the various meds.
As Hunter says, Rux can reduce allele, this was not really documented till just last year. This post is one discussing it
healthunlocked.com/mpnvoice...
Several members have reported reduced VAF on Rux, one quite dramatically. I have also.
My favorite option for best of both is the Rux/IFN low dose combo. But getting insurance coverage is likely hard.
"Another concern with jakafi is I’m not sure how long one can take it". It is a long term therapy for most PV pts. MF is more complicated and its limits are more apparent and better known there. My MPN Dr has Rx it for 12+ years for some PV pts. It has been a boring experience for me, I got a sort of intellectual pleasure in the manipulation IFN requires, but boring is good too. Most common effect we hear is weight gain, ok in my case. No appetite change for me. I've also had increased hair on since being it. (shower drain stays clog free)
Be sure to have the Shingrix vax, I'm not sure about its timing vs starting Rux. Shingles is slightly increased risk on Rux.
There should be another option for HCT fairly soon, this might be useful for the apparaent increasing need while on IFN.:
"Protagonist Therapeutics said it plans to seek FDA approval for rusfertide for treating polycythemia vera in late 2025"
cancer.gov/news-events/canc...
Thanks. My doc is actually working on the rusterfide trial at MD Anderson but she doesn’t think it will end up being a long term solution for me even if approved. I can’t remember the reason she gave because I asked so many questions about rux and was focused on her responses to that. I am somewhat reluctant to give up on interferon because of the supposed benefits beyond hct control and because it can be very slow acting but it’s been over a year on max dose with a year before that on lower doses and still no hct control so my doc is now convinced the interferon is not the answer for me even though she is a big proponent of int fir many patients. I am very disappointed because I tolerated the drug well and it has worked well for so many other patients. My doc theorizes that interferon doesn’t work as well for some due to differences in antibodies but that explanation was beyond my understanding and seemed like a theory only. Others have theorized that my 10% asxl mutation may be a factor but again that is just a guess. The relationship between jak ab or even secondary mutations and ab is still poorly understood but may affect treatment decisions some day. Best of luck to you.
I am PV Jak2 positive and currently into year 4 of Rux - Jakafi. I was almost 70 at diagnosis with hematocrit at 74 - very dangerous to say the least. Had no symptoms and was diagnosed because of way off pre-op bloods. I started phlebotomy and went monthly for 5 months. Age demanded a different approach. Next - Hydroxy for 3 Mo - no real changes and developed severe fungal infection. Started Rux with hmt at 51. After reading several trial outcomes and knowing how I react to meds, I went for low and slow dosing - 10 mg 2 times daily. Dosage was tweaked regularly but 10 mg x 2 daily worked best. At one time, my dosing was 15mg AM and 10mg PM.
In April, 2024, I officially maintained 48 months with no phlebotomy, 18 months with all bloods in normal range and 12 months with Rux at 10 mg x2. My allele burden is <3%, making that now 14 months. I firmly believe low and slow has kept me from any clots, strokes and heart issues.
My only remaining side effect is weight gain but over all I know just how blessed I am. I will stay on Rux but will likely drop dosage to 5mg x2 in 6 months if numbers remain stable. Rux has also been a godsend for itchy skin. That was a nightmare before Rux.
Follow your gut - you know your body and its signals. MPNs require attention and your drs are seeing many alternative meds being approved.
My mantra: I may die with PV but I don’t have to die from PV.
God bless as you make your decisions.
Do you know what your starting allele burden was and how long ago was that. I’m on Rux foe PV 7 years and so far it’s been excellent for me.
My allele burden at the start was 45 - I luckily had a bone marrow and bone biopsy at my first MPN appointment which was over 5 and a half years ago. This gave me and my dr a great point of reference for treatment. I had read about Rux losing effectiveness but that appears to be an early outcome when dosing was much higher - 20 and 25 mg 2x daily. I made it clear to my MPN that I wanted my body’s normal functioning to be a part of dosing decisions.
to Barney50:
Your experience adds to members with good mutation response on Rux.
The early high dose Rux trials you refer were for MF. Recent findings are confirming my Dr's opinion that Rux is excellent and durable therapy for most PV.
MF is currently having Rux combo therapies of recent posts that may show further improvements.
I agree with Hunter. I was diagnosed with PC in 2015 at age 71, and after more than 5 years or so on HU and phlebotomy without much success and serious skin reactions to the HU, my MPN specialist switched me to Jakafi in August 2022. Once the correct dose was determined (for me, 10 mg once a day), my blood count numbers have become stable.
sounds as if your doc is likely on the right track, another option is to combine Rux with Bes but I asked my MPN expert about that and he reckons they both do the same thing but in different ways allegedly.
Rux can also drop AB , I’ve been on Rux 7 years for PV after 7 yrs venisect only, it’s worked very well for me so far, BMB looked good and AB 20% last year, all counts normal. I couldn’t tolerate Peg.
Thanks. Happy to hear it has worked well for you and that is reassuring as I think about switching to Rux. My AB for Jak was 40% when I started besremi 2 years ago. My mpn doc places very little emphasis on AB burden and maximum emphasis on hct control but if Rux helps AB as well then all the better. I think the relationship between AB burden and progression is still poorly understood and many patients put too much emphasis on it but that’s just me and I’m no doctor. Also my insurance won’t pay for any more BMBs based on my current status and it’s quite expensive. Does ur doc indicate whether there is any limitation on how long you can take rux? I’m 57 so looking for a permanent solution to elimination or decrease in the frequency of phlebotomy and don’t want to take hydroxy for 20 years. Was hoping the solution was besremi but gave it a good go for 2 years at high doses and no hct control. Actually tolerated the drug well even at max does so disappointed it was not the solution. Best of luck to you!
to mfh7
Your note of paying for BMBs to get AB (VAF); this is actually available in a blood draw and usually done that way. But you want to compare same methods. So you can request AB test in the next blood draw. Below is a reason to follow it on Rux:
--
In the study I linked above they found a strong correlation of molecular response (MR) and event free survival for Rux. This plot is from the RESPONSE trial noted in that thread.
ashpublications.org/blood/a...
DMR was <2%, CMR is "undetectable". PMR was at AB cut at least in half. So at least for Rux in two separate trials, AB was relevant to progression. But fewer than half had MR. It points to tracking AB being useful.
This trial was for a long time, over 12 years.
My expert at Mount Sinai and before that Dr V at MDA said they hadn’t seen any PV patients losing effectiveness with Rux.
Who is your doc at MDA , I used to consult Dr V there every so often but moved to Mount Sinai when he left. His replacement was to be the young doc there with the east European name which I can’t remember.
I agree low A B is of no use if counts are not being controlled, count control is number one.
Hi mfh7, I found I had PV in late 2022, started Besremi going up from 50 mcg to 350 mcg over the initial months until my liver enzymes went off. My platelets had begun to descend, and HCT was better. I was off it for perhaps half a year while the liver mended, and while looking for help paying for the drug. Then I started up at a dose we had no intention of raising, due to side effects and my body's prompt reaction to Bes: 100 mcg twice a month. That minimal dose did the trick and within 7 months or so got my platelets into the good zone where they hadn't been for decades. My HCT has stayed in the normal zone the whole time. So I am very sensitive to interferons, for better and for worse, I guess. I had an allele burden of about 36 % at the start, but haven't checked it since treatment. This winter was rough with more side effects either due to the Bes or the PV, so the doctor and I opted to reduce to the very minimal 50 mcg for a few months. I was feeling quite good for a while, but now have terrible insomnia again. What a circus, huh? I sure hope someone is keeping good records on our very diverse reactions to these dramatic medications.
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