Hi, I was diagnosed with ET 18 months ago and am on aspirin. My platelets are on the move and my Haem wants me to consider hydroxycarbamide

[jamieisabella]

I'm not sure which I'm more afraid of, a chemo drug or a stroke. Anyone else faced this dilemma?

[rubyrubyruby]

Hi.

I was diagnosed with ET about a year ago and am on just aspirin. My platelets are around 800 but I am considered 'low risk'.

I feel the same as you about the drugs as it will only be a matter of time before I will be in your same situation.

[jogging1]

Hi, I had a stroke in March last year, which I have luckily recovered from completely, and I was diagnosed with PV. I'm now on Hydroxycarbamide and I feel very well, better than I did before I was diagnosed. I don't suffer fatigue anymore and I haven't had any side effects from taking this drug, but we are all different. I hope this helps with your decision.

[jamieisabella in reply to jogging1]

Thankyou for that, what helps most of all is that there are others such as yourself that understand this condition.

[JediReject]

Hi jamieisabella - don't be afraid to go with it. At the end of the day we have to respect the advice and trust those who treat us. I have been on HU for 6yrs and tolerate it very well. Many here have been on them alot longer. I would give em a go for a while and see how you get on. Cheers

[jane13]

stastically you're almost certainly better off on HU!

[catkinspolymer]

I have been on hydroxy urea/carbamide for 18 years and it works well for me with no side effects.

town crier

[audreyk53]

I too am on for HU for about 6 months and my numbers are in control, with no side effects. You will have your blood checked often as it can alter other counts so now and then the dosage may be adjusted. Don't be afraid, it is much better then the alternative. I was afraid at first too, I believe everyone is.

[Jocro]

Hi Jamieisabella, I have been on HU for almost 26 years. I was high-risk as my platelets were over 1 million, I was age 50 and had joint pain, fatigue and major headaches. So it was a no-brainer for me although I too was afraid. I am now 75 years old, have no symptoms or side effects from the HU, no other disease and have a very active life. You can see that HU is the right thing for me. I also take 81 mg aspirin per day. The HU dose has stayed at 9, 500 mg capsules per week for years. I have my blood checked every 2 months. My platelets are kept below 400 thousand. Some people cannot tolerate HU so they just stop taking it and try something else if they need to. My very best wishes to you.

[amarylis]

Hi - just to reiterate - have been on HU for 9 years (ET diagnosed 17 yrs ago) Have tolerated it very well - nothing major to report, lead a very normal, busy life. Odd twinges and symptoms that I now recognise are almost certainly down to the ET, HU or both, but honestly feel that you are best to follow the advice of the experts. Like Jocro my dose of 9 x 500 mg tablets and 75 mg aspirin have remained the same since I started taking them, and my platelets have remained around the 400 mark. Good luck x

[wendycu]

Hi ive been taking both HU and Aspirin (300g), for 8years, im fine with both, at first i fell sick that goes off, but some weight on, (but im here to tell the tail of my rare illnesses),

Tablets take to people in different ways, good luck. x