ET was the surprise of my year

Hi. I'm a 67 year old bloke who thought he was hale and healthy, until,..........

My journey started with a suspected coronary in April 2017 (pains in chest left arm etc) which turned out to be nothing. However my GP identified hypertension, which came as quite a surprise and decided to run blood tests, which identified high platelet levels - high 500's - which increased with each test. A visit to a consultant haematologist quickly diagnosed ET, which was confirmed by a positive JAK2 mutation from the DNA test.

I'm now on hydroxycarbamide (450mg per week), which I seem to be tolerating well. So far so good.

It's great to have access to this forum and I look forward to communicating with fellow sufferers.

13 Replies

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  • Welcome to the club! Lots of great information and support here. I'm still learning about my ET and this is the best place I've found. All the best, Merry

  • Hi

    Glad you joined us!! You’re very fortunate your docs diagnosed it before you had a bad stroke or heart attack. I’ve found this a great group of caring, supportive & knowledgeable people. Always feel free to ask any question or just post asking for some support during tough times- - which can be anytime you’re in need of some care and help. It’s easy to have meltdowns over small things too. Eat well, exercise, drink 2-3 liters of non-caffeinated beverages daily and be sure to have some good things in your life. Katie

  • Hi Ovingate,

    I would just like to welcome you to the forum. You will find plenty of reliable information and reassurance here when needed.

    I have ET Jak2+ too. Finding this forum was the first ‘chink of light’ in the early days of my diagnosis. Reading through many of the old posts helped me enormously.

    Mary x

  • Hi there, I too had what I call my fake heart attack, loads of heart tests,including an angiogram, showed nothing wrong . You don't mention taking blood thinner? Mine is clopidogrel. You have to take it even when the count is normal because the disease makes the platelets sticky. Regards Carole

  • Thanks for the post Carol. I'm taking Amlodipine for high blood pressure and 75mg aspirin as a blood thinner. Amlodipine seems to have brought down BP to a reasonable level, but it seems that once you are on them you are on them for life, which isn't too big a problem I guess.

    John

  • Not sure about being on it for life. I was on amlodipine too but after life style changes - lost 15kg and walking my BP dropped to normal so no longer on BP meds

  • Thanks James,

    That's good to know - light at the end of the tunnel etc.

    I'm down to about 138/88 on average now, but I seem to have hit a plateau at that. Just as a matter of interest what level did you need to hit before you came off amlodipine?

    Cheers

    John

  • Regularly around 132/70. Now hitting 128/65.

  • PS to clarify I reduced then stopped meds as I lost weight / excercised and monitored own BP. I then saw GP to confirm what I had done. All over about 6 months. Not recommended route by GP was happy with outcome

  • Hi Ovingite,

    I was diagnosed in the exact same way as you 25 years ago and am stil here. My medication is also absolutely identical . after 10 years I did start having venesections to reduce the Packed cell volume of my blood. I think the heart failure symtons are probably caused by the heart struggling to pump high viscosity blood. One thin I did find that the pains went away with exercise. Welcome to the club

    Town Crier

  • Hello Ovingate. Welcome to the forum, this is the best place to be. I was diagnosed over four years ago now with ET JAK 2 positive at first this was a bit of a shock but now I have put it to bed take the tablets and enjoy life to the full, I am 68 and I hasten to add that I don’t feel my age maybe because I make sure I keep fit and eat well lots of fruit and veg, at least two litres of water in a 24 hour period, plus tea and coffee, oh and the occasional glasses of wine still have to enjoy life I say, but everything in moderation cannot hurt. I attend hospital every four months now and my bloods are good, they are really pleased with me, long may it last!!! I truly believe that I had this condition many years ago, as like you I had a suspected heart attack, but when they did an angiogram they found I had a deformed artery with a blood clot in it, heart was fine, then had angioplasty to clear the blockage.

    Had hoped to go to the forum this year in London, but family commitment will not allow, but hopefully I will watch as they have a live link this year.

    And if you want anymore information ask Maz, to send you some leaflets, whatever you do, Don’t look at Dr Google, although helpful it can also be quite frightening, this is the best place to be, although we are a very rare breed, we are unique.

    So welcome,

    Jean

  • Hi and welcome. Our stories have some similarities. I’m now 68 and had had several bad bouts of chest pains that were investigated , and weren't caused by a heart attack. I also had pulmonary embolisms that had no apparent cause. I was given rivaroxoban, one of the newish oral anticoagulants as a result. But what kept me going back to the GP practice was bouts of fatigue that didn’t get better with rest. My GP practice isn’t in the best of health itself, and its almost impossible to see the same doctor twice. Which isn’t helpful. But the good thing was that a new doctor whom I hadn’t seen before suggested that I see a haematologist - more in desperation than anything else, as both the cardiologist and the respiratory medicine teams had said that neither my heart nor my lung conditions explaned why I felt so tired.. There was an unspoken implication that I had nothing physical wrong with me.

    But the haematologist found that my platelet count had been steadily going up over the years, and when he asked the right qestions and did the right tests he fiound that I had MF. Which explained a lot. This was in January this year ( 2017)

    So I was put on hydroxycarbamide, which brough my platelets down but made me feel anxious and depressed and generally dreadful. However once I’d been switched to ruxolitinib and topped up with the occasional blood transfusion I can do most of the things I enjoy doing. I’ve just had a 3 hr stint gardening. I did stop before I felt tired, rather than when I’d done all I wanted to do. Its a balance between trying to second guess the fatigue before it kicks in, and continuing to lead a satisfyingly active life.

    The forum is a freat source of support and information. Glad you found it.

    All the bedt.

    S

  • Hello Ovingite, welcome to our forum, as you can see the people on here are very friendly and knowledgeable about MPNs so anything you need to know, just ask. I would also urge you to read as much as you can on our website mpnvoice.org.uk which has lots of very useful information on it. Best wishes, Maz

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