My husband was diagnosed with P V about 6 month ago after pre-surgical blood work showed the elevated red blood cell levels. A bone marrow biopsy confirmed the diagnosis
he has been on hydroxyurea since then but has had side effects that are affecting his quality of life (lethargy, nausea).
he recently had his first visit with the specialist at Stanford medical center, here in CA. The MD suggested we look at both Besremi and Jakafi. I’ve been combing through the product profiles and am finding myself wondering how to decide which one to go forward with.
I understand that one is an injectable, so that might be a choosing point for some.
Any advice on what to consider when weighing the product differences? Or perhaps someone here has experience with deciding which one to try (first?). I believe that our insurance would cover either one.
Thanks for any guidance!
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Laluna5683
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Jakafi and Besremi are both excellent choices for treating PV. They work in different ways. Jakafi is a JAK-inhibitor. Besremi is immune modulating. They both can help to achieve hematologic response. Jakafi is particularly good for symptom control (e.g. pruritis). Besremi is believed to be disease modifying, potentially reducing JAK2 allele burden. There is more recent evidence that Jakafi may also have this benefit.
Suggest lining the two drugs up side-by-side. Compare the cautions/contraindications and the adverse effects. Based on your husband's medical profile, treatment goals and risk tolerance one of these two viable choices may look better.
I've been on all 3 of these since Dx late 2020. In what seems a previous life I posted on some comparisons and you can read my own deliberations pre-crisis:
All 3 worked well for my blood counts. Both Bes and Rux can reduce the mutation, while HU does not over the long term. This Rux benefit was shown in a good study only just this year.
The Bes injection is largely painless and one favorite feature for me was needing it only twice a month (or once after time). Rux is two pills each day.
If his mutation (VAF) is high (well over 50%) and reducing it is one of your goals, Bes is more likely to do so quickly. Rux also does this but as in prior posts seems less effective or rapid there for the highest VAFs.
As in the post above, the side effects of Bes (or PEG, the other interferon or IFN) can be more severe while Rux may have more overall. Bes has an FDA warning accordingly. Unfortunately for me I suffered the rarest and most severe sort, hence my switch to Rux.
But again this is really rare (I'm the only one here so far) and I believe preventable. You're likely in the Gotlib group so you will have among the world's best guidance. He knows my case.
If you go with Rux be sure to get the full Shingles vax series before starting.
If you go with Bes, my opinion as with others here is to use "the smallest effective dose". You may find conflicting advice on this esp from the maker of Bes. Also get your future routine vaccinations at least two weeks apart.
Two minor - and + for Rux; It causes weight gain for some while it has reversed my normal aging hair loss; no more hair in the shower drain. Both effects are known.
you’ve had good answers already, if you look on this MPN voice website it gives a good realistic picture on the drug options. Generally speaking sides tend to be more on Bes and rare on Rux, some will argue Bes has better chance of lowering allele etc so it’s a balance.
this is just my opinion, but my instinct when starting cytoreductive therapy was to start with interferon (pegasys or besremi) for two main reasons: 1: your body makes interferon naturally, it is a compound that your body generates to get your immune system going / disrupt virus replication ’ 2: it actually reduces allele burden in most cases which for us MPN folks could be thought as reducing our tumor size. Who wouldn’t want that? My blood numbers are being controlled decently so far but time will tell. I think interferon should be first line therapy base case for mpn
The down sides are side effects which are worse for some than others. That part is subjective. I personally have no side effects on pegasys. Some folks have the whole spread, liver enzyme trouble, anxiety, you name it.
My experience with rux is limited but I will be finding out about it if pegasys flops 😬
Good luck in your decision making. Just wanted to share my experience with interferon.
The note on natural IFN is good. In the rarest cases as I have experienced this extra IFN can take a wrong turn. This is likely the source of the black box warning of worst case permanent immune complications.
"Excessive interferon-α (IFN-α) production by innate immune cells is a hallmark of autoimmune diseases"
In these cases "getting the immune system going" is the bug rather than the feature. In the hope I remain the only one with this dire outcome the lesson is to watch for any concerning symptom, use good vaccine strategy, and pause therapy ASAP when indicated.
Having been offered the same choice, after having immediate and untenable side-effects on even low doses of HU, I made the decision to go with Besremi for similar reasons to those espoused by dbus1417, and in addition, my thoughts were that I didn't want to take anything that could increase my risk of infection [i.e., suppress my immune system], which is actually part of Jakafi's treatment effect.
That's why they recommend getting the Shingles Vax series prior to starting it. TB is another infection that it can make more likely, and since I work in a prison where it's possibly a risk, I didn't think it was a good fit for me.
As to EPguy's comments re: immune vs autoimmune diseases, in a sense, all the MPN's [and honestly pretty much all cancers]represent a failure of the immune system to recognize and kill cells that are abnormal, so it makes sense that boosting the immune response would be an effective treatment,
The case of autoimmune disease does represent [at least in some cases] an issue of too much INF and other immune compounds, but it's very distinct and different from our spectrum of diseases. They are in no way comparable otherwise.
The other reason I went the INF-boosting route , was that Jakafi's mechanism of action is to inhibit/block the effects of JAK2, an immune compound released [in higher than normal amounts] because of the mutations in MPN-affected bone marrow- so instead of addressing the root of the problem, it is instead blocking [some of] the downstream effects of having the disease.
In contrast, INF's go after the root of the disease- the aberrant bone marrow stem cells.
As far as having experiencing side-effects, I have been on the maximum dosage of 500 mcg biweekly for about 6 months, and I only had 1 episode of 24-hours of flu-like symptoms after a dosage increase midway up to this dose, with none prior or since.
I haven't had any mood swings, depression or anxiety, despite being told by an oncology fellow that I was too old for INF [at age 62] because it would likely give me a mood disorder.
There have also not been any mad changes in my labs, just some transiently elevated liver enzymes and renal functions, but they always self-corrected. My counts are gradually coming into line now that I've been on Besremi for just over a year.
Giving myself the shots could not be less of a problem, and even if I wasn't a healthcare professional, I would have had no problem following the extensive/comprehensive patient instructions and educational materials provided by both the manufacturer [PharmEssentia] and the oncology pharmacy [Onco360] that mails it to us monthly.
There are some studies that espouse the 'start low and increase slowly' approach , but some more recent ones supported fairly fast increases from a slightly higher starting dosages, to the maximum tolerated dosage, as getting both hematologic [blood counts] and molecular [decreased allele burden] control more quickly. I started low and went slow, because at the time I started, it was what my Onc MD recommended, she has since changed to a faster higher approach with her more recent patients.
The thing i hated most about that was wasting 450 mcg of a 500 mcg injection, but there was no alternative dosage available.
Your mileage may vary... and If you have any questions or want to chat or ask more questions, please feel free to contact me more directly through messaging here on MPNVoice.
Overall, I feel better now than I have in a very long time.
IFN is thought to reduce the allele by triggering expansion of the stem cells whereby the good ones out compete the bad to exhaust the bad. A neat effect and compelling reason to go for IFN. A deeper"how this happens" is still TBD.
Rux has been shown only recently to also reduce allele effectively for many. This is anti intuitive since as you say, and I have posted, it acts after the stem cells. Best guess I've seen is that reduced inflammation is part of it, but generic inflammation is a broad not real useful metric. Experts likely are trying to figure this one out. My Dr said in effect "I told you so". The plot here is in prior posts, lots of red pointing down is Rux reducing allele.
On auto immune: "...but (autoimmune) is very distinct and different from our spectrum of diseases" Unfortunately there is rare a convergence mediated via IFN, called out in the FDA black box. From members' posts if it does manifest it's usually in a reversible neuro reaction. The irreversible version is so far n=1 in the forum, hoping to keep it that way.
I guess for me, even though I have had some autoimmune- related problems, atopic eczema being the most persistent, the thought of increasing the risk of infection or cancer even slightly was/is anathema, whereas the autoimmune issue is less scary to me- at least at present.
This is for sure my very personal bias, most likely because both my mother and father died of cancer, [malignant melanoma, and renal respectively], and I have had 3 cancer diagnoses of my own already- chondrosarcoma of femur- age 19, polycythemia vera- in 5/22, and basal cell ca on my face- in 2/23.
FWIW, my eczema hasn't really seemed to change w/ the addition of INF, at least so far, so there's that.
I also have been on all 3. I am currently on Jakafi and it is working well. I had to stop Besremi due to terrible/persistent headaches. Each person reacts differently so you never know which side effect, if any, you may encounter.
Everyone has great answers. Before I started I had questions too. I am on Besremi and have been about 9 mos and my labs are normal now and I don’t feel bad. It caused hypothyroidism but to be honest I was headed that way anyway as my tsh has always been high just not high enough to treat. I feel great! Few bumps but it hasn’t even been a year. I got my thyroid under control now too. I know before I started I wanted to know from real people how it was that is why I joined and they helped me so much! I am a weird outlier too as I found out I have MS a year ago amongst all of this. And I am praying the Besremi is working for that too! I certainly don’t have any symptoms. Everyone is different but Besremi has saved me in a way. We are doing go low slow approach. Only increasing every 4-6 weeks if needed. I am at 225mcg and holding with a completely normal cbc! Hope this helps! Both drugs are good. Merry Christmas 🎄
I am also in California (SoCal, and seeing a UCLA doctor). I have been on Jakafi since Oct 2021 and seen my allele burden reduce from 60% to 25%. I think my hematologist chose Jakafi over Besremi or another interferon because of the awful itching I was experiencing (pruritis, as Hunter mentions). This debilitating condition vanished overnight once I started Jakafi! It took us a few months to get the dosage just right, but now my blood counts are stable. I have no weight gain (I have lost weight since my PV diagnosis), but I do get occasional fatigue which my hematologist blames partly on the PV and partly on Jakafi. This can be tough for a few days but then passes and I don't think about it again. Wishing your husband the best!
I'm glad to hear that you're doing so well on Jakafi.
Aside from the risk of thrombosis/MF and AML; aquagenic pruritus is the thing that bothers me most about having PV.
If I don't see any significant improvement in that in the fullness of time, I'm thinking of talking to my MNP MD about the possibility of adding a very low dose of Jakafi expressly for treating those symptoms, whether or not my Hct has remained in goal with just the INF .
IDK about your experience, but for me it's more than just feeling itchy, it's more like the sensations I have had in the early phases of healing after a severe sunburn, itching sure, but also having a painful very sharp 'pins and needles' sensation at the same time.
Unfortunately, it's not just after water exposure though, because if I leave my shirt off for more than a minute or so, it starts to ramp up pretty quickly, and if I'm sweaty, even more so.
Taking a twice-daily dosage of Beta Alanine, which is something that I found recommended here, mitigates/decreases it somewhat, but it's still there...
Hi, you're absolutely right, it isn't just itching, it's a burning sensation too, and changing clothes was the worst thing for me. Exposing my skin always brought it on. I would be OK in bed in the morning, but then as soon as I got up and took off my nightclothes to get dressed for the day it would be unbearable and I wouldn't be able to get anything done until it passed. Huge hours of the day wasted, pacing up and down in agony. Sometimes it would take until lunchtime for the itching to pass. Like you, I visited all sort of doctors trying to work out what it was: a dermatologist, and also in my case a gynecologist because I read that itching was a symptom of menopause (but I was actually post-menopausal by then and had no other symptoms). Only my eventual PV diagnosis uncovered the reason for the itching. Hydrea had no impact, so my hematologist put me on Jakafi and it has been life-changing! I would certainly consider switching or adding Jakafi if you can. My quality of life changed immeasurably. Good luck, and thanks for reaching out!
Probably the single best thing about being diagnosed with PV was finding out that it explained this problem, which I have had for >190 years, as my Hct/Hgb's levels climbed, but before my actual RBC, WBC, and platelet counts did.
Prior to that it was totally unexplained- my Derm MD thought it was part of my atopic dermatitis- which has actually always been limited to my hands. My PCP and other consultants never had any insight to it, so now I'm making it a point to teach them all about it.
Thanks for the validation- your story sounds exactly like mine, other than the INF vs. Jakafi- which was offered to me, but which scared me because of the cancer risks I already have and, which in addition to infection risks, it could exacerbate.
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