Hi there. I’ve just joined myself and have been living with ET since 2006. Reading yours and other peoples stories, I feel I have been very lucky! I was diagnosed after a routine blood test and immediately put on low dose aspirin and Hydroxycarbamide. I have had a few ups and downs trying to get the dose right. At one point a registrar decided to take me off hydroxycarbamide with near disastrous results. I lost feeling in both my hands and my platelets went way over 1000. However, overall I have had no serious side effects, apart from tiredness. I would say it’s vital to be as healthy as possible with a good diet and exercise, but don’t overdo it. When I overdo it I feel my whole body had shut down I have had a number of consultants and been to four different hospitals over the years. One thing I would say is that if you find a good consultant stick with him/her like glue! I currently have regular blood tests (yuk) and see my consultant every three months. Fingers crossed, I’m still stable and no bad side effects. Wishing you all the best and take care of yourself.

Hi, 

i asked my consultant if I could go on the hydroxcarmabide but he was reluctant due to my age. My concern is that the treatment I am on at the minute is more of a trial than something tried and tested. I’m pleased to hear you managing your symptoms - that’s given me some hope that mine will settle down too. The tiredness is hard isn’t it? I find that my body feels as though it’s going to give up but nothing happens - I just feel physically drained throughout the day most days.

Thank you so much for replying to me - I just wanted to hear from as many people as possible. I often feel a bit out of my depth with the consultant and almost as if I am being hurried along.

Yes, the tiredness is awful and people don’t really understand. I was told by one consultant to ‘push through it’! Not a hope!

if you’re concerned about your treatment you can go back to your doctor and ask to be referred to a different consultant for a second opinion. Or ask to have another appointment with your current consultant. It’s also worth googling in your area to see if there are any consultants specialising in Essential Thrombocythemia or Polycythemia.

I’m not medically qualified but I know Hydroxycarbamide can have some nasty side effects. I don’t know about long term use and have resisted the urge to google it! I was in my early 40’s when I was diagnosed, so I presume they thought the risk of hydroxycarbamide was ok given my age. My grandma was diagnosed with Polycythemia in her 70’s and she had radiation treatment - she lived to 94.

Good luck and I hope you find the right solution for you. Dont be afraid to keep asking until you’re happy and understand your treatment.

Thank you! Yes they said had I been older they would recommend the hydroxycarmabide but they said the risks are higher if I was to use that treatment long term (starting in my 20s) 

I met with professor Harrison in London who specialises in these disorders. And she basically told me very much the same as my consultant had already told me.

hioefully things start to get easier. All the best with your treatment