I've had ET since my early 30s and my platelets seem to be increasing by a set amount each year, I'm now in my 40s and platelets are at 900. It seems like I should be able to plot that and figure out when its going to get to a worrying level.
So I guess I'd like to know at what level will I need to start taking different medication? Currently I'm just taking aspirin.
My consultant basically said not much changes <60 unless you have a thrombosis event (which doesn't sound ideal, eg. wait for something to go wrong before doing anything?) . What is a thrombosis event? e.g. can you have minor? thrombosis events or is it just always really bad?
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Jpn4
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Interesting question! I was diagnosed (officially) in my 40's but had elevated platelets for at least 8 years prior to the diagnosis. My platelets definitely continued to increase in a linear fashion (more or less) from 500s to 600s to 700s to 800s to 900s about every year to 18 months. I too was on aspirin and watch and wait as low risk (<60; no thrombosis in history; no real symptom burden) - my MPN specialist is very much of the belief that these are individual diseases and each of us has a somewhat unique experience. Without symptom burden increases, he was fine to let the platelets get to the 1,000 to 1,250 point before intervention (again each MPN specialist and patient is different so this is just my experience with my doctor). Unfortunately my platelets decided to jump from 900s to 1,400 and I had some bleeding at the gums - at that point he said it woudl be good to start cytoreduction as it would appear something was changing.
One of the more positive aspects of having an MPN and seeing an MPN specialist is the almost constant monitoring - meaning that we are likely to catch any developments a lot sooner than the general pop - but your questions are quite valid. Most thrombosis events are related to blood clots blocking veins or arteries. A minor one would be small or one caught early or caused by things such as injury, immobilization - but any "minor" event can be cause for concern as the clot could form in a critical area or break free and travel to a critical area (hence the importance of daily aspirin therapy to help prevent even minor events).
You are asking some very good questions. As our friend Solyesh indicates, consulting with a MPN Specialist is the best way to manage your MPN and get case specific answers to your questions. I believe that you have the CALR mutation which carries a lower risk of thrombosis. This would be something to talk to a MPN Specialist about.
Thrombotic events occur when there is inappropriate clotting. Note that your body is supposed to form clots in response to an injury causing bleeding. The significance of inappropriate thrombotic events varies based on the size of the clot and its location. They could be minor or quite serious, even life threatening. Some events like a DVT in the extremities can also be quite painful.
It is worth noting that your platelets are consistently increasing over time. It is an indicator of the status of the ET. It is important to note that it is actually the risk of hemorrhage that increases in a linear fashion with platelet levels. It is possible to develop Acquired von Willebrand Disease, a bleeding disorder. While this typically happens at levels well above 1 million, it can occur at lower levels. It is also noted that people can experience increased bleeding/bruising at platelet levels below 1 million. I experienced increased bleeding/bruising whenever my PLT reached the 800s.
The recommendation for ET-CALR-Age<60 is just to monitor. Not all MPN Specialists will even use aspirin for people with CALR. The only reason to initiate cytoreduction would be if you were to be experiencing symptoms that required intervention. These symptoms could include thrombosis, hemorrhage, microvascular issues, and constitutional or secondary symptoms.
Hopefully, by the time you need to consider cytoreduction, there will be even better options. There is some very promising research underway specific to treating the CALR mutation.
I did what you suggest by plotting the increase in platelets over time before while I was just taking aspirin. Mine went up at about 109/year from 450 to approx 1200. It was a perfect y = mx + c straight line graph so I could extrapolate back to when my ET likely started.
When the platelets got above about 1100 I started to have symptoms - frequent headaches, especially when dehydrated, and transient ischemic attacks, which felt like something scratching the inside of my skull, nearly always from right to left. Every time that started I wondered if I was going to have a stroke so I decided to start taking hydroxyurea to reduce the platelets to less than 1000. The HU worked for 9 years
Make sure you see an MPN specialist. It could be the difference between life and death.
Hi Jpn4, before I had been diagnosed four months ago with ET I had been getting separate incidents of dizziness, vision distortion and sudden cramp like pains that didn't necessarily effect any main muscles/tendons. These could happen anytime even though I was feeling quite "chipper" which went against my thoughts of them happening when I was tired.The dizziness was enough to make me hold on to something, vision would was loss of focus for around 10 seconds and the pains were like cramp pain intensity but wore off after 5-15 minutes with no lasting usual cramp ache. So I suppose you could say lots of randomly occurring incidents of varying types but the forum has members that sound a lot worse and I think the conclusion is that everyone is different and you keep your GP and MSN specialist notified of any occurrences which maybe they have listed for you or in a booklet.
After being pulled in by my GP for high blood pressure during my annual "MOT", ET was diagnosed after a series of blood tests all which were taken over 4 months. Since taking the medication all the above has ceased but of course the side effects replace them.
I was diagnosed with ET at 37, and took only aspirin until I was 67. My platelets were stable in the 600-800 range over those years. Then I test positive for JAK2 and started Pegasys interferon because of my age and JAK2 status. I never had any thrombotic events over 30 plus years. My platelets quickly came into the normal range on 45 mcg of Pegasys weekly.
My situation was much like happyretiree's. I found by accident that I had high platelets in my early thirties. The numbers were checked each year and bounced around from high 400s to 500s, then for decades they were 550-750. As I approached retirement, they ventured into 800s, and I was tested and diagnosed with ET, then PV, given aspirin. Abruptly, platelets arose to over 1 million. I rejected HU for Besremi as a treatment. My numbers, aside from red count, are all within normal within 16 injections since September or October, so I'm taking a minimal dose of BES right now. I had visual migraines during those decades of high platelets, and have had in this last year one or two scary episodes of very brief visual darkenings, which my oncologist thought were still migraines. (?) I do have some profound fatigue now and then that is not what I think age 66 naturally brings. That and other assorted side effects is why I hoped to get my BES dose down. We'll see if the numbers allow me to keep it low this summer so I too can be a happy retiree.
I’m told despite what many may likely tell you that it’s not wise to sit around and wait for a thrombic event while waiting to turn 60. Many don’t survive their first event.
I agree. Talk to Dr. about starting Pegasys interferon. This has put ppl in remission.
Some take it’s sister drug Besremi.
900 actually is very high even though it’s not 1,000,000.
High platelets are anything higher than 450k at the most. The higher it’s gets the more potential for realistic thrombic and other health issues.
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