I just have a question for ET people. Is it possible to never have to take anything other than aspirin to treat ET, or eventually do sufferers have to onto stronger drugs over time? As I'm newly diagnosed I'm not as savvy as some of you and I'd value your knowledge.
Viv
Hi I would imagine if your platelet count is at a acceptable level & is in control can't see why not , but mind I'm new to this also 14 month & still learning about it , my platelet level was 900+ & after having a Tia I was then needing help reduce the levels to a acceptable level , I would suggest you talk to Maz she's like the guardian Angel on MPN I'm sure she will give you the information you need , good luck
From Pam Newcastle upon Tyne .
Hi VKH422, I was diagnosed with ET in 1993, platelets stayed at 650 for 18 years and I had only aspirin during that time. They did start to rise after that and I have been on Interferon for the last 3 years which brought them right back to 280. Stay as healthy as you possibly can and see how you go. ET is not the worst thing in the world and I was symptom free until I started the Interferon, but I can still do lots of things. Good luck, and remember, worrying won't change anything, so relax and go with the flow and do lots of things you enjoy, or be with people you enjoy. Good advice from Pam.
Hi, I was on aspirin alone for about 3 years, however when I got over 60 my platelet level rose to over 1100, as predicted by my haematologist! I have been on the HU for just over 12 months now. I was terrified of the drug but a year on I haven't grown another head or had any really bad reactions to it! My platelet levels are below 300, which is a "normal" level. I sometimes get stomach acid, I have gained weight and have a few mouth ulcers and bleeding gums - but things could be A LOT worse!! I don't have any symptoms of ET, it was found through a routine blood test. This forum has managed to put many of my fears about the condition and the treatment at ease! Best Wishes. XX
Thanks for your replies ladies. I'm seeing my consultant next week again with a book full of questions for him. It certainly helps to see how you all manage this condition. Like you say, it could be worse. Good health to you all. Viv x
Ask for a record of your blood count every time you go and see what it all means....everyone is so very different and react differently...just get on facebook MPN sites and read read read, knowledge is power only don't be frightened at what you read...ask questions through MPN Voice.....relax, go with it, respect your body changes, release all stresses and above all live for the day....my best wishes...Sylvia
I was not diagnosed until I was over 60 so I went straight on to HU. Again, I had no symptoms except joint pain which was put down to age and mild arthritis, and was diagnosed through a routine blood test. I took HU for 6 years and am now taking Anagralide as the HU became ineffective. The side effects of HU vary with each person, mine were sore mouth and gums and tiredness. I only took aspirin for a short while because they upset my stomach and I take Clopidogrel instead.
Sally
Hi Viv, the advice we have in our ET booklet is that other than aspirin many people with ET don't need treatment for many years, but eventually most do need some kind of further treatment. Your treatment plan will depend on your own unique situation and take into account the symptoms you are experiencing as well as many lifestyle risk factors like high blood pressure and whether or not you smoke. There are a number of medications available as well as a rarely used procedure called plateletpheresis - a method of collecting platelets from your blood. It is a good idea that you are taking a list of questions with you when you see your haematologist, it's always a good idea to do this so that you don't forget to ask something important. I hope this helps you understand it all a bit more. Best wishes, Maz
Hi Viv , I was diagnosed just over a year ago and had some difficult side effects from the ET (exhaustion ,tired, no energy etc ), I believe and was put on Hydroxy and was already on asprin , which probably helped , so no way of knowing how long I have had ET. But I keep well and try to be fit and eat well etc. I am a 51 year old male and had a mild MI 4 years ago when I was very fit , which surprised many, so the jury in my mind is still out as to whether the initial ET may have contributed to my initial MI ?? who knows and is now in the past . I enjoy Yoga and swimming , golf and the odd gym session. The highest my platlets were , was 700 now under 300 and feeling quite well. I hope things go well for you.
Hi Viv , I was diagnosed just over a year ago and had some difficult side effects from the ET (exhaustion ,tired, no energy etc ), I believe and was put on Hydroxy and was already on asprin , which probably helped , so no way of knowing how long I have had ET. But I keep well and try to be fit and eat well etc. I am a 51 year old male and had a mild MI 4 years ago when I was very fit , which surprised many, so the jury in my mind is still out as to whether the initial ET may have contributed to my initial MI ?? who knows and is now in the past . I enjoy Yoga and swimming , golf and the odd gym session. The highest my platlets were , was 700 now under 300 and feeling quite well. I hope things go well for you.
Thanks Joe. Do you think the fitter you are, the better you cope with ET then? I've always kept quite fit but since my diagnosis I've started swimming and going to the gym regularly and hope to keep it up - btw I'm 44. Viv
Hi Viv
I've been doing some work on helping myself keep healthy as possible, and have decided to cut out fructose from my diet as too much of it lays down fat around our internal organs and our blood, which heightens risk of stroke.
I've done lots of reading and research and fructose is hidden in lots of processed food - so that's out, as well as too much fruit and obviously sugar.
It sounds drastic, but the pay off has been amazing. I have my energy back, I don't doze in the middle of the day, I sleep better. The tingle I had in my feet has stopped. Everything just seems to work better.... and I've also lost 19lbs in about 3 months, which has to be better for me too. The Haematologist, while not able to say it had impacted my platelet levels, firmly believes that the less fructose we eat, the less fat we are likely to lay down on our internal organs and in our blood.
I did it to keep my blood running smoothly - the energy and sleep thing has surprised me, but it has to be connected as that's all that's changed!
I can tell you more if you're interested - don't want to carry on chatting in case it's of no interest!
Lizzie, I'm really interested in knowing more. Do you follow a diet sheet showing everything with fructose to avoid? I seem to think a friend of mine eliminated it for a while and felt the benefits. As I'm a shift worker as well I'm always interested in keeping my energy levels up. Touch wood I don't seem to suffer the extreme tiredness a lot of ET people seem to get. Don't know if there's any sites you can recommend for fructose free eating tips? Thank you Viv : )
Hi Viv. I started by reading Sarah Wilson's I Quit Sugar. It details the theory and nutritional side of things and then gives loads of ideas. She has a website as well that is really helpful and has loads of recipes on it. I wish I could tell you just how much difference this has made to my energy levels and how well I feel!
Liz
When I am given my prescription to take to the hospital pharmacy there is always a page of stats abut my blood with it, I take a picture of this on my phone, then put it on my computer when I get home, that way I can monitor the counts of all the "bloody" things that are checked each time!!
Thanks Lizzie, I'll do that. How often do you have your blood checked?
I take just aspirin, and have done since late 2015. My platelets were 1400 initially, and are now stable at around 1200. I've had a bmb, and ultrasound of my spleen. For the moment, aspirin is sufficient.
i admit I am worried, as my platelets are rather high. Also, I have neurofibromatosis, and often require surgery to remove tumours. They are very vascular, so haemorrhaging is a real risk. I had minor surgery on my foot last week, and lost over a pint of blood from a 2 inch wound.
The whole thing makes me feel very uncertain about everything, and my haem consultant is not the easiest person to talk to! At least we have this site to chat.
Newly diagnosed
Newly diagnosed ET
Aspirin and sleepiness
Newly diagnosed with ET 
