Age with ET

[Mardihel]

Hi I would love to know if there is anybody with ET on this health unlocked group who is over the age of 84. I really worry about taking this hydroxy every day and if it will reduce my lifespan., and if you are would you class yourself as healthy. Thank you.

[JediReject]

Hi Mardihel, , my take is that unless you are intolerant to HU or you're unfortunate enough to develop leg ulcers or skin cancer from it then you are more likely to extend your lifespan by taking it to greatly reduce your risk of blood clots by controlling your counts. I'm unsure about evidence of Leukemia transformation for or against.

Some of our senior members on here have been taking it for many years and maybe a few will respond. It's probably unknown if long term use will eventually be detrimental or lead directly to shortening ones lifespan. But I'm sure many have had longer lives by taking it. Of course that cannot be quantified either.

I took it for about 9 years from mid 2006 to 14 and it did me no harm as far as I'm aware.

Good luck - Chris

[Mardihel in reply to JediReject]

Hi I do realise it's kept me alive too, I would love to know how long my platelet count was at 948, I had blood test at 63 no symptoms whatsoever and was given the news ET Jak2, I keep levels between 500 and 600 but the haematologist wants me to take more tablets to reduce. I just wonder if it will reduce my lifespan. Thank you x

[Virginia91]

Hello Mardihel, I have a friend who is a GP. He has a patient who is 90 years old with ET, taking HU and she is still going strong. In fact very active. Wish you all the best. xx

[Mardihel in reply to Virginia91]

Oh thank you so much for that news x x

[ElsieR]

Hi Mardihel, I have been on Hydroxy for 10 years in a couple of weeks time. I will be 84 in August. As well as ET I have AF and COPD!!! I take lots of pills and keep reasonably well. The only thing that is troubling me at present is my hair loss. It is getting thinner by the day. I have been on an increased amount 500 and 1000mg alternative days for a while now but it is only since I was in hospital in November with my COPD that it has got really bad. I am very worried about it. I spent 2 hours gardening yesterday so you see, I am pretty well fit!!Elsie R

[Mardihel in reply to ElsieR]

Oh Elsie R that's brilliant news, hope you get your COPD sorted, please keep well

[Solyesh]

Waiting for my last appointment, met a wonderful woman with ET at 88. She is on Hydroxy 1000mg/day (2 pills) and has been for 5-6 years - she still walks 3km a day and swims 3 times a week (she says she has to stay in shape for her great grandchildren as she's worried her grandchildren's generation doesn't cut it

[Mardihel in reply to Solyesh]

Oh wow so she was diagnosed at 82, brilliant, only on hydroxy for 6 yrs, the thing is I started hydroxy at 63 hope I feel the same after 20 yrs on it, that's what worries me.