Can anyone help me with why different countries treat MPNs so differently? If I am correct USA treat ET with meds as soon as platelets rise over 450 yet in England this is not the case. My PC has been between 800-1180 and just continue with low dose anadin.
Thank you 😊
Hi Mich10
NZ is also like UK, however I am now 67 and only still on aspirin. 65 is the age that was termed 'the go on medications" like HU etc. I think if my knowledge is correct about MPN your cardiovascular health is more important as we age. Like monitoring your BP, stress levels, lipids, no smoking, good diet of fruit and veggies, trying to have good sleep habits and exercise regularly. I try to do all of these things and are keeping well with no side effects from ET with CALR mutation. My platelets around the 700,000 mark and have been pretty stable for a few years now. They have been as high as 970,000 but was very stressed at the time. 450,000 is very low to be starting medications where here in NZ 400,000 is classed as normal!.
I realize I am one of the lucky ones and don't have symptoms like I read about, and I am very grateful for that. I just keep positive, working 4 days a week and enjoying life. Oh and monitored yearly by a hematologist. 6 monthly blood tests.
good luck with your inquiry.
Lyn NZ
Thank you for replying Lyn x
I’m in Australia and last test I was 930 and I’m still on aspirin. I’m symptom free though.
It's supposed to be focused on how symptomatic you are as well but England don't seem to care much. Hubby's are always in high 900's & he's very symptomatic but just aspirin & they don't monitor his BP, which is slightly elevated. It might be the difference of Health Insurance funding things in the states. The British standard for diagnosis is higher levels than the WHO levels. So that probably plays a factor too.
I just saw my haematogist in The Netherlands last week. He said 1500 was the figure when they bring in cytoreductive treatment.
Obviously it would depend on other factors too but as I’m low risk and <60 I’m quite happy with this.
But yes, it is interesting how different countries have different protocols. Kind of shows medicine isn’t an exact science.
Thanks for replying x
Hi Mich10,
Like Lindiloo3, I'm also from NZ, but am living at the opposite end of the country and my haematologist was following the protocol of platelets 1500 (1,500,000), or 60 years old, or other risk factors, or too symptomatic as a guide to when to start me on Hydroxyurea. I eventually had to go on HU at age 59 when platelets were around 1280 and symptom burden was too troubling. Prior to HU I was on aspirin only. If I had been in good health we would have had a discussion when I turned 60, but may have continued on aspirin only if other factors were favourable enough. It really is a very individual thing.
Thank you for replying x
Hi Mich,
I am very much like Lindiloo. Diagnosed 5-6 years ago with PV ( Male,62 now) . My platelets have settled around 500-700 . I am asymptomatic and just take aspirin and venesection every 6 weeks or so. Feel fine.I think medical cultures do vary. Some doctors leap to medication, some are more " watch and monitor". I am fine and in no hurry to take HU. But I will if things go awry.Keeping fit is what I try to do...and I am lucky I suppose.
You are right. Cultures do vary. Current thought is that treatment should be risk based. However, even slightly raised blood pressure is a risk factor. Watch and wait is OK but if it is a stroke or heart attack that prompts treatment, I would rather prevent that!
As science evolves and we head towards disease modifying treatments this will prompt changes in care pathways. We are already seeing peg interferon being used in that way.
Thanks for replying x
I am Canadian and I was on aspirin only until platelets over 1500. I think you may be wrong about the start of meds in the U.S..
I am in the US, and the treatment protocol just changed here 2 years ago. It depends not just on platelet count, but also age, other risk factors, previous history, and as of 2 years ago, most importantly, JAk2 status. I’m not a doctor, but the way I understand it is that if you are JAK2 positive, it indicates HU much earlier than it used to.
I live in Australia, and I am 69, Jak2 positive, highest platelet count was 629 and down to 475 two months after on HU and blood thinner. My Haem is a professor, researcher of MPN, he said to me that in other countries lots of patients don't have to be on both medicine like I do because they are under 65 yrs of age. In Australia once over 65 patients have to take both due to older age has higher risk of clotting and stroke problems. Anyway I have been on anti-inflammatory diet, also keep hydrated, exercise, keep cholesterol and weight down help our conditions too. My next appointment will be early September. I've also requested my GP for blood test every two month so to monitor kidney, liver as Hu and blood thinner are both very toxic, and my Haem also give me appointment every 2 month with blood test. Don't have serious side effects at this stage.
Hi. I read the US MPN site where it was stated that the US doctors are 'dumfounded to learn that UK haemas treat blood cancer with aspirin'! Do you think it's possibly the UK being penny-pinching again? There's a different system of footing the bill .
All th ebestin the US
I think money and healthcare funding certainly plays a part in this (I’m in the U.K., ET JAK2+, 39yo, low-risk so currently on aspirin and Watch & Wait). Our NHS is struggling. In my experience it’s brilliant at acute care, but for a chronic condition like ET it seems to me that it’s reactive rather than proactive, and I think that probably has to do with money.
That’s not the case. I’m in the US. They tend not to treat (other than low dose aspirin) until counts reach well over a million or if you’re at high risk. I had counts in the 800’s but was very symptomatic and I had to fight and switch doctors to get HU, which has made me feel much better.
Hi, I'm in the US and ET Jak2+ 69yo male. My platelets bounce around between 460 and 550 for the last 7 years only diagnosed 2 years ago. My mpn specialist at the Cleveland Clinic recommends only aspirin at the present time in spite of my age. Don't know how long this will last or what he will recommend the next time I see him in May 2020. I am followed by a local heme every 3-4 months who also agrees with this treatment-non-treatment plan?
In the US tx practices are all over the map, both literally and figuratively. The treatment philosophy of the individual doctor is the single most important factor. Add to that the formulary driven decision making by some third party payers and HMOs and it is quite variable. Sometimes these decisions are made based on the financial considerations - best interests of company vs the patient.
All that be as it may there are docs who treat lab numbers and docs who treat MPN symptoms. Docs who rigidly follow standard treatment protocols and docs who look at the unique presentation of each patient and individualize treatment. Since MPNs are so rare, there are very few docs, even hematologists, who have the knowledge and experience to truly provide optimal individualized care.
All of the above contribute to the wide variability.
I have been treated both in Spain and in the UK. In both countries the treatment is similar for ET. Unless you have had a stroke or a TIA (then classed as high risk), and are under sixty five years old, they tend to treat with low dose aspirin and keep an eye on the platelet levels by three monthly blood tests. This has been my experience anyway, but I am high risk, with very high blood pressure and having had two TIAs. I have been taking low dose aspirin, blood pressure meds, statins and Hydroxycarbamide. I also take omerprazol to protect my stomach and esophagus.
Other than rattling, with so many tablets, I keep reasonably well.
Hope this helps Mich,
Good luck.
I was diagnosed at 54 with e.t jak 2+ after an eye bleed. I was told the venous eye bleed was not attributed to having e.t.... but I did gave other symptoms... extreme fatigue, burning feet, night sweats.... platelet count was about 898, they put me on HU and clopidogrel to start... the H U stopped working, so they put me on interferon alpha 12 mu per week... 4 injections a week 3 mu per time.... my platelet count is now 403 and steady.... I'm being changed to pegylated... in September.....I'm also not on clopidogrel anymore, due to having gastric problems whilst on it, e.g burning stomach aches.....
I think it depends on who is treating you, and your symptoms....
Take care peeps... xxx
I am in the US. I was diagnosed with ET Jak2 positive 11 years ago at age 52 when my platelets were about 600,000. I had been suffering with headaches and fatigue for months. My hematologist put me on HU right away and my headaches went away. But after being on this site for about 7 months now, I wonder if he could have been less aggressive. I was otherwise healthy. I progressed to PV about 3 years ago and he put me on Jakafi, as well. I’m finally getting a second opinion after all these years next week.
I'm in the UK, diagnosed aged 39 in 2001. I can't remember my platelet count, but I was put on Anagrelide straightaway (randomized to it on the PT1 trial). I was later switched to HU and the team of consultants were happy if my count stayed below 600. In 2012 I moved to a different part of tne country. My consultant now likes to keep it below 200. I'm now on Pegasys.
I live in Europe,and my heam told me that in countries like mine that you dont need the private insurance for having the drug (so there are no financials involved so much), you can be more proactive and given the drug earlier
New drug name to me anadin for lowering blood platelets?
Hi - I live in the UK and was diagnosed at 52 jak2 positive and platelet count of about 900 - I was very symptomatic and initially I was put on Analgride which gave me palpitations and transferred to Hu. If my platelets go above 450 I am symptomatic. In 2018 my platelets were controlled but I still had a bilateral Pulmonary Embolism.
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