Hi folks, I'm new to this site but thought I'd introduce myself.
I'm a 42 years old male and recently been diagnosed with ET which was flagged up by a high platelet count and then a few weeks ago was confirmed to have the jak mutation.
I've been prescribed the low dosage aspirin and no other medication.
I have a physical job and most days I'm fine but I have spells of tiredness where I feel physically weak, also it's like my brain goes into a fog too. I find it difficult to think clearly, to the point where it's hard to string clear sentences together. Is this the fatigue that others struggle from?
So far taking my prescribed aspirin, and keeping hydrated seem to be the 2 important things to do?
Anyway, thanks for you time, this site looks to be a good source of information and encouragement, there's a lot more reading I need to do and lots to learn.
Sunny
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SunnyY
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Welcome to the forum which you will find very helpful in beginning to understand your ET diagnosis. I say 'beginning,' as at least I think, it is quite a complex condition and I'm still learning 18 months on. I encourage you to read through old posts as I did when I was first diagnosed (also ET jak2+).
In regards to fatigue this is the one symptom we all seem to share. I have'nt been too bad of late - but I do know how it feels when it hits. I also find it hard at times to find 'words' to convey my thoughts in a conversation which is frustrating
At 42 you are still quite young - hence you being prescribed aspirin only. Age (60+) is a stronger predictor of a propensity to strokes/heart attacks as are certain co morbities. I am prescribed aspirin and hydroxycarbamide due to my age as a risk factor.
If you wish the administrator (Maz) can send you out informative literature on MPNs.
Hi Sunny , I was about 42 when first found I had ET , now nearly 73 , thought this would cheer you up.
I have searched through my old notes on my case which may be of interest.I am now nearly a 70 year old man living in the wilds of Wiltshire and still going strong whilst living with ET.
I started in the rubber industry in 1963 on leaving school and worked for a tyre company in the west of England called Avon, now owned by Cooper tyres of the US. Stayed in the rubber industry another 15 years and then went onto a similar occupation mixing specialist plastics fo another 22 years.
Had some visual disturbance and dizzy spells in late 1985 and had a privately funded medical check including a blood test, which possibly showed some evidence of myloproliferative disease.There was some notes on my blood tests where the technician had written presence of " basofils, myloproliferativre desease ?" On recently checking also spotted PCV was 49 at that time. my GP at the time did no understand the significance.
It all seemed to get better and was all forgotten about by me and my GP until 1996 (with a new GP) when I was in serious trouble with high blood pressure chest pain and lethargy. Blood test showed a platelet count just over 2 million and a BMB revealed ET. This was controlled with 18 time 500 mg tablets of HU per week and fell to about 330, 000 where it has been for the last 12 years. Recently however it has fallen to 270,000 and hem has reduced HU to 13 per week. PCV has risen to 47 and I am now having a phlebotomy every 6 weeks or so to keep it below 45. Back in 1985 I had two small children and I just got lucky that I did not have any kind of thrombosis. My girls would have suffered without their Dad.?
Generally today I keep well but cannot do an 8-hour workday. Managed to semi retire in 2000 and now fully retired but doing lots of charity work with our entry to Britain in Bloom.I am also now the town crier. However one shock was that when I retired I rang a Swedish friend who i had gone to college who also worked in the the rubber industry and found he had PV. We searched hard but did not find any significant increase incidence of myloprofilerative disease in the Rubber industry. Perhaps most ironic of all two other so called healthy close college friends have now died of heart failure whilst me and my Swedish colleague keep soldering on. I also enjoy long (8 week trips) to the Continent with my caravan but have to have a phlebotomy as soon as I get back. To be absolutely honest the ET interfers very little in my life , but it does make you get on with things you want do.
all the best hope the spelling is up to the mark.
all the best
Chris Atkins
Brit 72 years old ET diagnosed in 1996 but some evidence of MPD in 1985 10 times 500mg HU per week baby aspirin every day and amlodopine to control the blood pressure.
Hi Chris, thank you so much for the encouraging reply. The news when it was broke to me was a huge bomb shell as I have only got married last year. My concern was partially for my wife as she lost her dad to cancer when she was only a young girl and I dread the thought of history repeating itself.
I work in the automotive refinishing industry so in essence I'm a car paint sprayer. It has crossed my mind whether the chemicals I come in to contact with on a daily basis has been a contributing factor to the halo mutation?!
I've had 4 blood test of which 3 had a reading of over 1 million, my last test was 900,000. My next test will be in a few weeks since taking on the aspirin so I'm intrigued what my next results will be!
Hello SunnyY, welcome to our exclusive club, that none of us wanted to join! You're young to have been diagnosed, but better diagnosed now than later after having a stroke! It's usually when your platelets go over 1 million that medication is prescribed, hopefully that won't be for some time for you yet. It is quite daunting when you are first diagnosed, but try not to worry too much about it. There are a lot of us on here who have had ET for years without too many problems! You will feel fatigued at times and unfortunately there is the brain fog too. However remember you could have been diagnosed something a lot worse!!
I Googled ET when I was first diagnosed and scared myself silly, however after finding this forum I realised most of the information on the internet is complete rubbish!
If you want to know something, no matter what, ask on here, someone will have the answer.
Thank you Lizzie! Yes I did the same and jumped straight on google in a panic when I saw the big C word in the mpn booklet!
As a self employed businessman I've got a soft centre but I've got a lot of back bone. The diagnoses of ET was different to what I'm use to though as it's something that was completely out of my control, and it's something I can't change.
It does put life in a better perspective though. I'm determined to make the most of my life and hopefully I'll be around for a while!
Welcome from me too. The fatigue is the worst part I think but drink your water and it does seem to help, particularly so in the hot weather we have been having lately. I used to love the hot sun but tend to hibernate now. In fact have had such a burst of energy this morning as it is cooler and the rain is about to show itself. Yippee! I am an ancient now but as you will see from Town Crier - age is not a barrier to having a good life with an MPN. Good Luck and here is to the cure that is bound to happen in your life time.
I'm glad to hear so many stories of lives lived fully by MPN sufferers!
I think I need to be more disciplined with keeping up my water intake. It's interesting about the hot weather though. Before I was diagnosed with ET we often went on holidays to sunny climates and I always felt the need to drink crazy amounts of water even though it went straight through me, it's funny how the body kind of knows what it needs.
We've just booked our first holiday since the diagnosis of ET and we're off to Portugal. For the first time I'm armed with flight socks, aspirin and electrolyte powder for hydration ha ha!
Welcome, this site has helped me no end, I was diagnosed with ET aged 30, changed to PV 17 years later, I have always suffered from fatigue and belive my condition to be the cause.
Hello Sunny, welcome to MPN Voice, this is one of the best forums to belong to. I was diagnosed four and a half years ago now with ET JAK 2 positive, bit of a shock to say the least, but it did make me realise why for so many years I had suffered terrible bouts of fatigue and ill health, now that I take Hydroxycarbamide 500 mg daily and a 1,000 Sat and Sun and enteric coated Aspirin and so far my platelets are now normal (long may it last) and life for me is good. I make sure I keep fit, eat a very healthy diet with lots of fruit and veg included and consume at least 2ltrs of water a day which keeps everything flowing through the body, also I enjoy a glass or two of wine my treat I feel, not every day but socially when out and about with friends, and when I attend hospital on my four monthly visits they are really pleased with me, have my checkup next month so hoping all is still good.
The one thing I would say is, avoid the social media sites, and stick with this forum as we are all here for one another, and if you are unsure or worried about anything, you can ask Maz, who is our coordinator to ask the question of Professor Claire Harrison, who always will provide an answer no matter how small, plus Maz can set you up with a buddy who you can talk to that has ET and knows what you are going through and sometimes they can even give you reassurance.
You are young at 42 and that is properly why you are just on Aspirin, think they call it watch and wait which at such a young age is good.
It's great to know there fantastic support on here!
I have quite a few friends who are younger than me so it's nice to be called young at 42 haha. My haematologist did actually say he's just monitoring the situation, I'm on a 10 week check up cycle for my blood tests
Great username! Thank you for the information. All this is new to me and only just getting to grips with even the acronyms like mpn, et, pv, jak2 ha ha!
But thankfully my wife is an ex nurse so she pointed me to the enteric coated aspirin.
A quick (possibly dumb!) question superwoman while we're on the subject, I've been told the aspirin makes the blood less "sticky" and thins it slightly. Does it also reduce platelet count?
I can't emphasis enough how useful it is to go to an MPN Voice Patient Forum, that are held all over the country. It's great to meet people with the same problems and especially people who can advise you.
I'm so sorry that you have become a member of our exclusive club at such a young age. The rareness of our disease is a bit of a problem, in as much that our symptoms are not obvious and given that, it is understandable that we don't get much sympathy when we are feeling really low and could do with a boost. It is good that you are only on aspirin at the moment ( do take the enteric one). That should stop a possible clot, which is what most of us ET sufferers worry about. The heamatologists don't usually prescribe hydroxycarbamide until age 60 and I understand that is because after a long period on hydroxy, the mutant genes (jak2 or Calr) may eventually find a pathway round it. There are very few drugs available for ET and PV, so like antibiotics, the don't want to use them until they really have to. There is a lot of research being done and I am hopefull that one day soon that there might be a breakthrough. Perhaps some targeted therapy, who knows. Try to stay positive.
If you listen to some of the Andrew Schorr interviews and broadcasts, you will learn a lot and you can pose questions to him through MPN. Voice.
The fatigue, brain fog etc. are definite symptoms although drinking lots of water will help. I drink two and a half litres a day.
I hope you will feel more positive soon. Try not to worry too much, after all there is little percentage in it. Easy said, I know.
Come back any time with questions or just for support, there will always be someone here who is more than willing to help.
Hello Sunny - My situation is similar to yours. Last year I was diagnosed with ET at age 42. I too am currently on aspirin only. My consultant advised me, as did the Drs I met at Guys Hospital in London on my referral visit, that a persons' general health and physical fitness is a huge factor in whether or not treatment (other than aspirin) is required. The rule, as others have suggested in their replies, is to stay as fit and healthy (whilst still enjoying good things in life of course!) as possible. In addition to this forum I also found the information booklets available on the Bloodwise website very very useful. Like yourself I wanted to learn as much about the condition as possible, however I was given some good advice by my consultant that learning it bit by bit is a good way so as not to become too overwhelmed. I am on a watch-and-wait regime which took me a while to mentally come to terms with, but now I'm used to the routine. My count hovers around the 1300-1500 mark, so it is high, but keeping positive and healthy allows me to continue at the moment without any medication other than aspirin....a good incentive. I wish you all the very best. Caroline
Thank you for the information and sharing your story I lead a pretty stressful life running a business but I'm putting things in place to address that. I'm fortunate to live very close to the hilly countryside so intend to go on more frequent walks. I've only a couple of weeks til my first blood tests since being put on aspirin so I'm quite intrigued how they'll compare.
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I lead a pretty stressful life running a business but I'm putting things in place to address that. I'm fortunate to live very close to the hilly countryside so intend to go on more frequent walks. I've only a couple of weeks til my first blood tests since being put on aspirin so I'm quite intrigued how they'll compare.
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