I was diagnosed with polycythemia Vera JAK2+ in November 2023.
I was prescribed daily aspirin and hydroxycarbamide 500 mg taken Monday to Friday, with Saturday and Sunday off.
I had 4 Venesections in the first two weeks and then once two weeks later.
After complaining about feeling constant headaches, fatigue and generally feeling very unwell, my hydroxycarbamide was reduced to one every other day
The day after not taking hydroxycarbamide my symptoms reduce a little bit, but then the day after taking hydroxycarbamide my symptoms come back with a vengeance
I would like to request a different medication, but I’m unsure what my options are
Any help or advice would be greatly appreciated
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Greengolfer
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hello Greengolfer, I am so sorry to hear that you are experiencing these side effects. There are a few different treatment options that you can discuss with your haematologist, we have a list of medications on our website, you can also download booklets for each of them, or I can send you printed copies. mpnvoice.org.uk/about-mpns/...
I’d like to thank all that have responded to my initial post. I thought I was posting a simple question, I never expected such a fantastic response from so many well informed members. I’m certainly going forward with a much clearer idea of possible alternatives.
Sorry to hear that you are hydroxycarbamide intolerant. Fortunately, there are other options to treat PV. These include the interferons, Pegasys/Besremi, and a JAK inhibitor, ruxolitinib. Access to these medications can vary based on where you live/which healthcare system you are in.
We all respond differently to these medications. Like you, I am hydroxy-intolerant. I have done much better on the interferons, which have been easier to tolerate and more effective for me.
Ideally, you can review your treatment options with a MPN Specialist. These more specialized hematologists are very familiar with the treatment options for PV and the other MPNs. Here is a list just in case you need it. mpnforum.com/list-hem./
The treatment options available depend on what country you are from and the experience and treatment philosophy of the hematologist you are seeing and of the cancer center he/she works at. Even among the world's top specialists, there are heated debates about which treatment options are best. The debate described in this 2014 article is ongoing even in 2024! mpnforum.com/an-open-letter/
Keep strong. You are your own best advocate. Hope you get this resolved and good luck (PV patient since 2022 and hydroxy didn’t agree with me either giving same side effects as yours).
Hi, I am quite new to this journey too. I was offered the choice of Hydroxycarbamide & Peginterferon. I asked the question here and got a lot of support for peginterferon. I've had 15 injections to date and, although there are side effects, I find them tolerable. I am still able to work and this also distracts from the side effects.
Given the choice again, I would still choose peginterferon.
Good luck on your journey. Please keeps us update 🙂
Hi Lyndjs, thanks for your reply. I’m also quite new to all this too. I wasn’t offered any alternatives, I was guided by the doctor who I’m sure was trying his best. However, I think it wasn’t the best choice for me. I too am looking at interfon as maybe a better way forward.
I understand that Jakafi (ruxolitinib) has fairly recently been approved for prescribing in the UK for PV. It's a tablet rather than injection, so very easy to take. It has been a game changer for me. Worth asking your hematologist about, as well as interferons. Good luck!
Jakafi has a good reputation as a "makes me feel good" medicine, but not for slowing or stopping disease progression. Very brief video: youtu.be/QdEoPlcuf6A
The OP is seeking our opinions on PV treatment options. We owe OP our best efforts there.
I recently visited a young ENT who had this to say (in effect) "we Drs know very little how the human body actually works." Refreshingly accurate. We patients don't know either.
Please update your info to reflect the current knowledge. This would include no longer posting this 3 year old opinion of Dr Silver: "I don't think (Rux) is going to change the basic biology of the disease". I'm sure Dr Silver would agree with the above admission of my ENT Dr.
Most in the MPN field, including Dr Silver, likely consider VAF (mutation burden) to be part of MPN basic biology. Current knowledge has Rux effectively changing this basic biology of the disease. This has been posted on the forum re a recent clinical trial and experienced in real life by at least several members including Sewingtime here and me. See my result here where Rux seems to be taking it lower than IFN was trending. "Makes me feel good" is also not to be minimized, Rux is often uniquely effective there and OP may value that highly.
One member has also noted possible marrow improvements on Rux, more info here TBD.
IFN is amazing but remains mysterious in its magic (and risk). Rux has now also surprised the field with a positive effect it should not have based on its primary known action. (My MPN Dr said "I told you so") At the same time IFN is the only med in our regular set with an FDA black box warning. I admit a bias to notice this certain detail. Adverse risks need to be part of a well informed decision. (all Tx have including no Tx at all have risk)
In sum, we should encourage everyone to explore all the various options, and be sure to stay humble in our knowledge of the implications.
Hydroxyurea, like Jakafi, also temporarily lowers the Jak2 allele burden during the initial 2 years of treatment whereas interferon does it in a durable way that can last decades (see 5 year graph below). Unfortunately, Jakafi has a reputation of losing its benefits after an average of 3-6 years of use whereas interferon does not. This is an important consideration for 70+ year olds like me and Greengolfer because stem cell transplant is not a treatment option for us if we progress to myelofibrosis. Greatly slowing or preventing progression is a top priority.
Thank you. Useful info. I am 60. I have been on Jakafi for a little over 2 years and when tested recently my mutant allele frequency had reduced from 60% to 25% during this time.
So I know this data well. I also have posted plentiful details on the large benefits of IFN. Likewise on HU's unexpected benefit for marrow improvements. So I look at Rux with good knowledge on the also effective alternatives.
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You note a benchmark of 6 years. MF pts do often go off Rux therapy from anemia. (good news is there are newer Jak-i's for this) But this limitation is not applicable to typical PV. If you have data please provide, it will expand our knowledge.
With 6 years being of interest, IFN on average shows a reversal of VAF effect at ~5-6 years. Left plot is from data published in the final ContiPV set. (I'm trying to find this report again, one of my posts has it. The authors have done well to bury this and never plotted it) Center plot is from earlier PEG trials, I've posted before. none of this reduces the amazing overall effect of IFN, nor assert that this reversal is clinically important, but does point to a sort of average time limit on the VAF reductions.
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The right end red/blue plot is Rux at average data cutoff of 4 years. "By the final time point available, both more frequent and larger reductions in JAK2V617F VAF were observed with ruxolitinib" We await VAF data past 6 years. This waterfall plot of VAF reductions looks similar to those for IFN. Notably BAT (nonRux meds being compared) included ~27% on IFN.
Note that most Rux trials have been with HU resistant pts, so it is a high bar.
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This report shows a large Rux benefit out to 12 years. It shows a long term benefit is known for many. It also shows one deficiency vs IFN in this result, a starting VAF of <60% gave a best VAF result on Rux. So IFN may have an advantage for the high VAF pts.
For MF there is this large n report that is new to me. It's reasonable that PV pts could also see a BM benefit. A 5-1/2 year study:
"The finding that long-term ruxolitinib therapy may reverse or markedly delay BM fibrosis progression in advanced MF suggests that sustained JAK inhibition may be disease-modifying" (my emphasis) Authors include our familiar Srdan Verstovsek.
Other reports point to better benefits with lower grade MF, but the broad message is relevant.
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I hope you can take some further time to explore the current state of knowledge for our treatment options and let members decide with the best and latest info on offer.
With regard to one of the 2022 papers you cited about the long term outcome of PV and ET patients that were treated with RUX, the following highlighted excerpts state that: "progression to secondary myelofibrosis occurred in 31.1% of patients after a median of 6 years."
That's a high %. Do you know why such a high % are reported to have progressed in this study? Or have I overlooked something important that explains it?
Thanks for the details. I'm not at my top game with Sjogren's my constant companion.
Member PhysAssist recently posted a report on HU Resistance/Intolerance (HU-R/I) that coincidentally informs the discussion. I offered comments there, see plot here.
The more recent HU R/I report indicated that HU-R hazard carries over to pts on Rux or IFN meaning if one is HU-R, Rux or IFN therapy will be handicapped to a similar extent.
Most Rux trials have by design selected HU R/I pts, so Rux would carry this handicap if above applies. IFN studies have largely not selected for HU R/I so a better result would be expected if above applies.
The cut off of 60% VAF for best Rux result in the 12 years study in this thread may reflect the H-R handicap, ie those over 60% had the most HU resistance. This study also had "Median time from diagnosis to RUX was 5.9y" implicitly later stage PV including the failure of HU, while Proud PV had "early stage polycythaemia vera"
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Our most comparable info would be the RuxoBeat trial where “Treatment with ruxolitinib in untreated patients with PV is feasible, well tolerated, and efficient,”
So there is no pre selection since there is no pre-treatment. But this trial has reported only 6 month results, and is planned for only two years of therapy. We can hope they add longer data points.
There is another long term trial going on comparing all three treatments, but I can't recall its name.
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In sum, current Rux results show an effect on the biology of PV but the extent is likely strongly negatively biased by HU-R status and somewhat by the later stage PV of most Rux trial pts.
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Thank you
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