hi all, I have been diagnosed with PV about two years ago. My consultant recommends that they monitor my blood level and treat it with venesection and a daily dose of aspirin. Steadily my platelet count has been rising towards 1000 while my haematocrit has remained steady below the threshold of 0.45. I’m not sure why my platelet levels continue to rise even without venesection over the last four months.
My MPN consultant is considering letting it go even towards 1500 of platelet count before further medical interventions. E.g. hydroxy, or interferon. Does anyone have similar or different advice from their doctors under similar circumstances?
thank you!
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STK52
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There is too little information to be sure about the steadily increasing platelet levels. This could be reactive thombocytosis or a change in disease status. Not sure what your baseline level of PLT was to begin with.
I did experience something similar. My PLTs cycled between the 500s to 700s, unless I was experiencing reactive thrombocytosis due to illness or injury. That was the pattern until the long-term effects of chronic iron deficiency became evident. After a few years, my PLTs jumped up by 200K, routinely cycling between the 700s to 900s.
I gather you must be considered low-risk PV, age<60, no thrombosis, no co-occurring risk conditions. It t is pretty common to stick with venesection + aspirin even when thrombocytosis is evident. There is a newer train of thought that there is value to initiating interferon therapy with younger low risk PV patients to reduce risk of progression. That is a determination you would have to make for yourself.
If you do decide to initiate cytoreduction, note that hydroxy is generally not used in younger patients due to the risks associated with long-term use. This would be a conversation yo have with your care team if needed.
That is a significant increase. It certainly makes sense to explore possible causes of reactive thrombocytosis. When I had the spike in PLT, we also rechecked my JAK2 allele burden to see if there was evidence of significant progression. There was not. We also checked for the non-driver mutations to see if there was anything other than the NF1 that we already know about. There was not. The conclusion was that this was reactive thrombocytosis due to the venesection-induced iron deficiency. The MPN Specialist did not feel a BMB was indicated to confirm this.
Hope you get this sorted soon. Please do let us know what you learn.
The doctors in the U.K. generally prescribe drugs only for symptom relief and blood clot risk reducing purposes, not disease progression slowing or stopping purposes, hence they wait until the platelet count gets up to the 1000-1500 area before prescribing anything other than aspirin and venesections.
In Denmark, the doctors consider prevention of progression to be a top priority and since interferon is the only drug known to suppress progression they were commonly prescribing it way back in 2014 for ET and PV patients (see below).
Interferon is immunotherapy - an immune system booster - that's most effective if started in early stage disease, before blood counts like platelets get real high. Additionally, if started early, the patient often only needs low doses that are easily tolerated. So in Denmark you would probably have been prescribed interferon back when you were first diagnosed and it would have likely normalized your platelet count and minimized or eliminated the need for periodic venesections.
Hi STK52, I am 55 and 7 years in with a PV diag Jak 2 pos. I remain on vene and asp, although I am meeting with Guys to discuss the pros and cons of Interferon in terms of further disease inhibition. In actual fact my counts have lowered on the plts recently - they had gone as high as the 1500 mark, but are now consistently hovering around 1000.
Its curious that its not a linear journey, and I have never been assessed to see how many of my cells are mutated. My main reason for not going down the meds route was being young, at least relatively - diag aged 49. although I am now curious with the improvements in meds, even over the past 4 years or so, for example when I was first diag Hydroxy was all I was offered and now its more conversation about Interferon and the possibility of besremi as that is required less frequently - with newer drugs and DNA splicing now on the horizon, I wish for hanging on in there until the drugs are less 'toxic' but of course, it's all weighing up how you are coping with the condition. My tips are to stay as healthy as you poss can to allow your body the best chance for dealing with the condition and this is working out well for me so far I feel. i.e healthy diet, v occassional glass of wine only, working less, trying to stay calm, regular yoga, dance, meditation, time in nature, gym work inc weights, inc+ hydration, less caffeine and practising gratitude to our incredible physical systems for adapting to such a 'set back' with such success. Keep a pos mindset, our body is all one, so if we 'despise our disease, we are limiting our bodies as a whole and setting up a bad vibe environment' so thank our bodies for what really amounts to a big warning sign to take care of ourselves with more love and compassion - it all sounds woo woo I know, but it really does help. Don't fall into victim mode.
I also have been finding success with NAET (natural allergy elimination technique) therapy. as far as I am aware there are few practitioners in UK, and its more prevalent in Europe, since working with Helen (who curiously used to be a top cancer drug researcher) before shifting onto the holistic side, this is when I have seen the reduction in my counts from 1500 to 1000 (PLT) and 17 to 13 WBC, reds remain stable at around 7, I have vene roughly once every 3 or 4 mnths or even less. Curiously the German lady who trained my practitioner, Helen, has PV herself and controlled it for many years this way, although she herself as I understand it has gone onto INTF recently - which shows that its about having a sensible balance between holistic and conventional systems to suit your individual needs. Sorry for the ramble, I am rushing a bit this morning, so may not be the best share!
Good luck and sending love to you all sharing this winding path. x
Thank you Roxanne. It’s really good to hear from you. Seems like our journeys are quite similar. I have been diagnosed less than two years ago and so it’s good to know that you have had it longer and have been on such positive mindset.
I am curious that there are other opinions that earlier medication invention such as interferon inhibits progression. In the UK, we are not taking that approach. My MPN consultant who is based out of the Christies in Manchester believes that there is no clinically proven evidence to justify that, but I have questions about that too. just because there hasn’t been controlled clinical trials doesn’t mean that the supporting data from other countries are not valid. Out of curiosity, did you discuss with your consultant what the long-term negative impact of taking interferon?
Hi No I haven't had that conversation yet, although I am led to believe that interferon of all the meds is perhaps the best one to be on long term, but at the end of the day they all have some issues for long term use. I have also seen about the use of interferon early on in the disease path, from an inhibiting point of view. I have see this to be the case in Italy too, as well as other European countries. It's all a balancing act, but the good news is that medical breakthroughs are happening all of the time and some excellent research recently has brought new understanding - for example, I know Prof Harrison shared about a year ago that they now see elevated WBC as being more 'risky' for thrombotic episodes (as opposed to plt) not that elevated plt are good you understand, but as I say they are gaining more insights all the time. So deffo one to ask about with your own specialist team, and each day you can play your part by keeping a smile on your lips where poss and making pos health choices, which will assist your existing condition and hopefully also keep other glitches at bay!! Have a good day, and take care xx
Normal Life Expectancy for Polycythemia Vera Patients Is Possible. Excerpt: "Hopefully, this study motivates development of new PV risk stratification and treatment recommendations that focus not only on hematologic control and thrombosis prevention, but also on preventing MF progression, improving OS, and restoring normal life expectancy." sciencedirect.com/science/a...
My platelet levels were 1,000 when I was referred to our local hospital Haematology Consultant and she immediately put me on 1 Aspiration a Day plus Hydroxycarbomide. I do not tolerate this very well and feel exhausted and unwell most of the time. Not sure if it is the Thrombocythemia or the meds! I was first diagnosed after my first Covid vaccination when I started losing weight (1 1/2 stone) when my G.P. referred me for bloods and they discovered my platelet levels and my ET! Life changing sadly!
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