Well platelets have risen to 1000. Staying on asprin for now. Said once they get past 1500 then they may consider further treatment. Because I'm 53 still low risk.
I am feeling so much better now. Sad they had gone up but I can't stop it. If anyone has any tips what else I can do to reduce platelets would try it
Onwards and upwards
HI Heather,
I am 65, almost! and have been told I am also at low risk too! I have ET with CALR. My platelets were 990 at their highest. My last test they were down to 601! I was over the moon. As for what I do? I have cut stress out of my life!!! Eat well, with lots of fruit and vegetables. Walk most days. I also take a product call ambrotose, a product from USA. But who knows what has bought them down? But who cares, at the end of the day, as long as they come down!!
Lyn
Ps I just take aspirin 100mg
Hi,
I was put on hydroxy once mine reached 1000, they kept rising and they kept putting up my dose until it peaked at 1400 and then began falling, it's now roughly 500-600 and I'm still on the same dose of hydroxy 1500mg a day mon-fri and 2000 sat sun and aspirin. I have changed my life by starting exercise and eating more healthy, but still enjoying going out and drinking etc although on a lesser scale. Not sure if it helped but I certainly feel better. I am now 45 and was diagnosed about 5 years ago. Good luck.x
Hi, my platelets are at 1.7 million and I'm only on aspirin . I'm 46 and my doctor feels like I'm low risk at this time. It's very scary walking around with these numbers . I have pv for 4 years now .
Hi, I'm 50 and feel that Hydration is key - it helps with blood flow and energy. I take Clopidogrel once per day because I am allergic to Asprin. My platelets range between the 400s and 700s. For the last 3 years I have been taking 400mg Turmeric twice per day, Vitamin B Complex, Magnesium, Vitamin C each day with the agreement of my Haemotologist - If you wish to try any natural products then double check with your Haemotologist first - Turmeric, Ginger etc are blood thinners too. I am lucky as my Haemo is open minded and is happy for me to take Turmeric and checks me regularly, yours may prefer you didn't take them. I hope this helps x
my platelets went to 1500.lots of pain in feet and a tia stroke. I was put on hydroxyurea 1000mg plus two baby aspirin.over time my platelets dropped to 600. that lasted about four years.things eventually changed and I now have mylofibrosis which happens to et patients sometimes.I'm now in a clinical study takeing an experimental drug called momolitinib.it seems to be working pretty well just have to keep eye on platelet count now they go very low.88...I guess my point is make sure your very comfortable with your hemotologist and your getting the proper care.I heard some crazy stories and I'm very lucky I happened across the great drs.from the beginning.good luck and happy new year...
I have no idea about whether there is any truth in it, but raw garlic, fish rich in omega 3 oils and pomegranates (fresh/juice/extract) are supposedly to have a platelet inhibitory effect, according to the interweb. So heaven only knows on that one
I can't vouch for it though. I'm still in the early days of exploring this different shaped pitch, courtesy of ET.
On a slightly different tack, I did read about someone who had said eating kale worsened the side effects of their illness, and as it was rich in vitamin K (from memory), that boosted clotting, which is the exact opposite we're looking for with elevated platelets. Worth googling that too - there may be food groups that worsen symptoms or at least are best to avoid in silly quantities
I'm sure that healthy diet can only help. And from my exercise regime, I know that means protein, carbs and healthy fats - our bodies need those. I'd personally shy away from no carb or low fat diets, because to my mind, we weren't designed to live like that. That is very much my personal perspective, so please don't treat it as gospel. I'm no more right than the next person. But I'm sure a decent diet and as much exercise as you feel able to throw into the mix can only help.
I think a positive mental attitude is key. And you're sounding that way. Good luck - and focus on the good stuff. 😀
My platelets are 408 and I'm still on 2 x 500mgs of Hydroxcycarbomide daily with an additional 1 extra and the weekends, plus 1 aspirin! On diagnosis my platelets were 1547. It's an ongoing battle with my consultant to reduce my chemo as I've noticed a lot of people of on a lot less medication with much higher platelets.
The increase can be due to many things, not just the disease. I had an infection before Christmas and my platelets shot up by 297.
Stay positive, drink plenty of water and try to maintain a healthy lifestyle.
Best wishes
Angela
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