[color=darkblue:8367b4a835][/color:8367b4a835] :wink: Hi I have been diagnosed with essential thrombocythaemia for over 10 years. I am British and live in East Anglia though I was diagnosed when I lived in Oxford. I had severe complications from using Anegrilide (heart and lungs) and now have hydroxicarbamide which I tolerate fairly well - though a tiny bit of 'morning sickness', dry skin (especially mouth), fatigue later in the afternoon, are reactions. I am lucky that the condition is managed successfully. One concern is (and I suspect this is true of so many longterm illnesses) that family, friends and the medical teams seem to lose focus on one as an individual. The result is that I find it hard to admit any symptoms now. My hospital runs a teleclinic system so I have not seen anyone for nearly two years - even when my platelets counts are over the 450 guideline. There is therefore an element of feeling 'forgotten' or unimportant. I'd like very much to read and learn from other patients' experiences. Best Wishes
I AM 42 HAVE HAD ET SINCE MY EARLY TWENTIES I ONLY HAD TWO BLOOD TEST TWICE A YEAR UNTIL I WAS ABOUT 34 I WAS LOSING WEIGHT IN SO MUCH PAIN WAS SORE TO BREATH I WAS YELLOW IN COLOUR MY CONSULTANT ARRANGED CT SCAN IT WAS FOUND THAT I HAD HEPATIC INFARCTION IT WAS THEN MY FABULOUS DOCTOR AT EDINBURGH WESTERN GENERAL HOSPITAL PUT ME ON HYDROXYUREA AND I NOW ATTEND EVERY THREE MONTH BUT NOW THIS TIME I GO BACK IN JAN BECAUSE THE DOCTOR WASNT HAPPY WITH MY BLOOD RESULT SO HAD TO GO TO GP TO GET RETESTED HOSPITAL THINK ORIGINAL WAS A BLIP
Hi I live in England too (Yorkshire)and I am 42 and have been diagnosed with ET for 10 years now. I always read on info pages that there aren't many symptoms with ET but I found the opposite, I used to faint 3 times a day and feel tired and washed out constantly. I took Anagrelide for 2 years but was took off it when they found there were dangerous side effects. I don't really have treatment now and my platelet count changes regularly. I have been lucky and not had any major clots or infarctions My fainting only happens occasionally now but I find i catch colds and infections constantly I also have to have iron infusions every 6-8 weeks because my Ferritin levels are always low which makes me tired. I was wondering if anyone else has other symptoms with their ET, similar to mine?
Hello, my name is Phillipa and I am 46 years old. I was diagnosed with Essential Thrombocythaemia nine years ago, I had been on a combination of Anegralide and Hydroxyurea but developed an intolerance to Anegralide. I am now taking two 500mg of hydroxyurea plus Clopidogrel and a stomach tablet, I seem to be having problems regulating my platelet level and having to attend hospital every three weeks.
When the disease was first diagnosed I was told the disease would not change my life and I would not experience any ill effects.
I have three teenage children and work three days a week. I experience fatigue on a daily basis and would be interested to hear how other sufferers cope with this. I feel quite isolated and worried that the hospital only look at the blood count and not the whole well being of my body.
Looking forward to hearing from you.
Hi, I am 45yrs from Yorkshire, and I have had ET since my early 20's. I was on Hydroxyurea but had bad side affects and was placed on Anegralide. I have been on AG now for almost 2 years. I am having problems with concentration and I am tired all the time. I suffer from gout as a side affect of the ET so tired and in pain is not a good combination. I am having difficulties at work and at home. When I speak to my Drs they say none else has these issues, it can't be this drug.
Well I beg to differ.
I feel that no one is listening and there are no alternatives.
hi when my et took hold i ended up with three infarctions to the liver over a period of time i was put on hydroxurea i tolerate it very well but i was offered interferon which i did not like the sound of the side effects i was in my early twenties when diagnosed with et but i was 32 when i went down to 8.5 stone nice colour of yellow and in agony i am domperidone and aso persantin to take the stickiness out of the blood my consultant at hospital is fantastic but my gp does not know anything about et which is frustrating so i have to write down if i have any strange symptoms or if really worried i phone consultant secretary but i should be able to approach gp but cant :x but to all et sufferers we got to try and stay positive and know we can keep each others spirits up
I've literally just been diagnosed with ET (as in...today!) and I'm still a bit in shock and trying to take it in. To be honest I've no idea what this means. I'm in my 20s, a Type 1 diabetic and otherwise very fit and healthy. I'd really appreciate a quick heads up as to what to expect, what to ask my consultant etc etc.
It would be much appreciated.
hi hanh i have had et for many years what it means is that your bone marrow has went into overdrive producing to many platlets which we need for helping of healing of cuts it forms the scab it also means that your blood is sticky what you must do if you are getting put on medication what are the side effects also what is the out look going to be are you going to get any tests how often are you going to attend but most of all stay positive if you are lucky you may have a fantastic consultant if it helps before you go to the hospital write down any questons you may have but please what ever you do i know it's easier said than done try not to worry
[quote:17132535e4=\"nicola archibald \"]I AM 42 HAVE HAD ET SINCE MY EARLY TWENTIES I ONLY HAD TWO BLOOD TEST TWICE A YEAR UNTIL I WAS ABOUT 34 I WAS LOSING WEIGHT IN SO MUCH PAIN WAS SORE TO BREATH I WAS YELLOW IN COLOUR MY CONSULTANT ARRANGED CT SCAN IT WAS FOUND THAT I HAD HEPATIC INFARCTION IT WAS THEN MY FABULOUS DOCTOR AT EDINBURGH WESTERN GENERAL HOSPITAL PUT ME ON HYDROXYUREA AND I NOW ATTEND EVERY THREE MONTH BUT NOW THIS TIME I GO BACK IN JAN BECAUSE THE DOCTOR WASNT HAPPY WITH MY BLOOD RESULT SO HAD TO GO TO GP TO GET RETESTED HOSPITAL THINK ORIGINAL WAS A BLIP[/quote:17132535e4]
Hi I've was diagnosed with ET 4 weeks ago. I'm 33 years old. Id been feeling ill for sometime and just put it down to having two small children.
I had a Platelet count of just under 3000. I've been on hydroxycarbamide and an aspirin a day. Ive been having side effects with the tables such as lots of mouth ulcers. I'm constantly tired and dizzy and i just want to feel well again so i can enjoy my life with with two very special boys.
I've had a CT scan and having a ultra sound on my spleen.
My specialist has told me i may have to have a CAT scan and Bone Marrow test. I had a blood test to see if the JAK2 mutation was present and it was negative.
I've also been referred to an Ear, Nose and Throat specialist as i have regular swollen glands and earache.
Keeping all fingers and toes crossed that everything is going to be OK.
[quote:34e4c0e630=\"Jacquiann \"]Hi, I am 45yrs from Yorkshire, and I have had ET since my early 20's. I was on Hydroxyurea but had bad side affects and was placed on Anegralide. I have been on AG now for almost 2 years. I am having problems with concentration and I am tired all the time. I suffer from gout as a side affect of the ET so tired and in pain is not a good combination. I am having difficulties at work and at home. When I speak to my Drs they say none else has these issues, it can't be this drug.
Well I beg to differ.
I feel that no one is listening and there are no alternatives.[/quote:34e4c0e630] :D
Hi, I am 46 years from Sri Lanka and it was diognosed me as a ET 5 years ago. I have reached my platelt count as on 22nd June 2009 report up to 965,000 and my doctors has given me only clopidorgel tablet.
I am also haveing regular body pain and accute gastrities
I was diagnosed with ET 2 years ago. I was started on asprin and hydroxycarbamide (2 x 500mg) but within weeks my red cells completely crashed so I was given 2 units of blood. Things continued like this for a few more months until my haemotologist reduced my Hydroxy to 1 x 500mg and started me on 3 x 500mg of anagrelide. the anagrelide causes heart palpitations. I have had a heart scan and everything is ok. My platelets just do not wish to be controlled and at their worst I was having to get my blood tested every week. I seemed to stabilise for a few months and suddenly in March my red cells crashed again I was immediately give a blood transfusion and 2 weeks later given an iron infusion.I have just recently had an Ultra Sound scan and endoscopy to check for an internal bleed. My haemotologist told me that most patients are stabilised within 6 months of being diagnosed - but not so in my case. I suffer fatigue but others do not understand. I too suffer memory lapses and my haemotologist said that she had not heard of anyone else suffering this. Like most other sufferers my GP had never heard of this disease and neither of the others in the practice either. I am lucky as I have a sympathetic GP who took the trouble to research my condition in order to understand it. I have never had a bone marrow biopsy but I have been told that I have JAK 2 platelets which is common in about 50% of sufferers. I am glad to have found this website and be able to discuss my concerns with other sufferers I too was only able to find American sites or blogs from a couple of years ago. I have 8 weeks between my appointment this time which is a record but I have been advised that if i feel unwell to contact my haemotologist at once.
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