I have had ET for about six years now and it has been quiet. I actually thought my haemo was making it up! Recently though

in the past 6-8 months I have had incessent itching, been feeling very tired to the point where I can't even get out of bed and just don't feel myself. My platelet counts were normal when I went for a check-up 6 months ago. My question is I am 37 therefore does this disease worsen as you get older? I have not had any medication like you all have had but I sometimes wonder.......any suggestions?

6 Replies

  • Hello,

    I have had E.T for 6 years now and for me it has become more difficult to cope. Not sure if it is because of the age or just the illness..or a mixture? Anyroad, one can only get on with it.:-)

  • These are all classic ET symptoms Tracy, I can clearly remember experiencing them and a few others prior to my diagnosis in 2003. It's usually when your side effects start to affect your quality of life that meds are considered and it seems that you are at that point. You need to speak to your GP or Haem about your symptoms.

  • Six months is actually a long time (eg my platelet count recently went up by over 200 in only 2 weeks) so you should see your haematologist again but don't worry about it because if your platelet count has raised... all of us on here are proof positive.

  • Thanks everyone for responding but now and I know its stupid but with meds will my life dramatically change? Reading about everyone on meds and how they cope I don't know. When I was first diagnosed I really couldn't believe it but I accepted it quite quickly and that was because I had literally no side effects. Now that it's happening I am nervous. As Swede says you have to go on, yes you do but any advice you guys may have I'll really appreciate. What does everyone take to keep their energy levels up? Any specific tonic? What about diet, do any foods help? Apologies if I sound a bit weird about this but everyone's been great.

  • Hi Tracy. I was diagnosed with ET nearly 20 years ago. At that time I had four boys under 10 so life was very hectic to say the least. I don't know if I was just too busy to feel the effects of ET or maybe I was just lucky and didn't have too many effects to deal with? I've been on medication all that time and really just took the tablets every day and attended clinics and didn't have time to worry too much about it. Unfortunately, I am one of the rare ones who have gone on to develop MF but if you are thinking "oh, what will I do if that happens to me?" I would caution you not worry about that as it would be unlikely and there is such a flurry of research interest at the moment and so many new drugs undergoing trials that I'll bet they get a handle on all this before too long.

    You certainly don't sound weird - just experiencing the anxiety that is completely normal! There is a lot of good information out there nowadays and these sorts of forums are a godsend too. When I was first diagnosed I had to rely of medical contacts to get any info for me and ET was not even in the average medical textbook according to my GP.

    Find out as much as you can because you will come across many medical personnel who know little about ET and it is important that become your own advocate.

    Good luck

  • Hi. I am same age as you. Diagnosed just over year ago with ET but had it probably for around 10 years. The itching, fatigue and aching legs are my symptoms, the fatigue being the worst!

    I am only on aspirin. My previous consultant had me on 6 monthly appointments too.

    I am now under new consultant who as picked up that my RBC count is high now so I may now have PV as well. My fatigue has got so much worse over last 6 months but that could be down to the high RBC count.

    Hope this helps.

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