Wow! what a journey! Thanks for sharing. I've been meaning to do a video about my ET on my channel but haven't got around to it yet. I was diagnosed with JAK2 positive ET about 15 years ago at age 33, but had symptoms at least 3 or 4 years prior to that. My platelet count was 750,000, and we controlled it with 325mg daily aspirin until two years ago my platelets were over 1,000,000 and I started have issues. Now I take 500mg of Hydroxyurea daily and I'm stabilized at 600,000 and no symptoms. There have been a few bumps on the road, but ET hasn't held me back too much. After being sedentary for a decade or two, I started distance running at age 39. It was a life-changer. Getting regular exercise gave me a huge energy boost and helped me lose a few pounds. I've run 5Ks, half and full marathons, several 50Ks, two 50 milers, and one 100-miler. Hydroxyurea has caused a few problems, including mild anemia, some fatigue and digestive issues. But all in all, things are going pretty good and I'm thankful for the health I still have, and also for the love and support of my wife and three children.
Will hydroxyurea drop Platecounts...? Where as me I am taking hydroxyurea and aspirin from last one year and my Platecounts are still between 6 lakh to 8 lakh ... And hydroxyurea have any side-effects?
@@ChokkaraManisha I'm not qualified to give medical advice, but I can just share how it has worked for me: In my case, about four weeks on 500mg of Hydroxyurea daily reduced my platelet count from 1,000,000 (platelets per microliter of blood) to 600,000. Levels have been stable since then, and I remain on 500mg of Hydroxyurea and 325 mg of aspirin each day. 600,000 is still high, but at that level I do not have any symptoms so we are just maintaining that. As far as side affects, I've had a few mouth sores and digestive discomfort that seem to be caused by Hydroxyurea, but both issues have been manageable.
This video from 4 years ago came up on my site. I have been doing a little "research" since I was diagnosed with ET several months ago. I had been feeling very weak and they tracked it down to a JAK 2 mutation. i can see and hear the emotions you have gone through. How are you now? My situation is different as I am 80 years old. However, it feels like a big loss to me because up till last year I was hiking in the mountains and swimming in the ocean. Now I have to really push myself to walk and swim in the gym pool. I must sound ungrateful because I have had a lifetime of being active and able, and yet I get pretty depressed at times because it was not a gradual loss from aging. I am taking hydroxyurea and it has helped the platelet count but I suspect some of the side effects are similar to the disease symptoms. I do have some good days when I think I have conquered it, but it always comes back. which can be very discouraging. Thank you for letting me share this. I would love to hear how you are doing.. Fran
I've been diagnosed with ET and tested positive with JAK2 mutation seven months ago. I am 66 and have refused to take Hydroxyurea due to side effects. The platelet levels are tested each month and keep rising, now at around 600 000 mark. My Hematologist says I am in the very high risk category as I had a thrombotic event seven years ago. Another event could happen: another blood clot, a mini stroke, heart attack or a bleed on the brain. I've decided to take the Hydroxyurea and begin next month.
Wow! what a journey! Thanks for sharing. I've been meaning to do a video about my ET on my channel but haven't got around to it yet. I was diagnosed with JAK2 positive ET about 15 years ago at age 33, but had symptoms at least 3 or 4 years prior to that. My platelet count was 750,000, and we controlled it with 325mg daily aspirin until two years ago my platelets were over 1,000,000 and I started have issues. Now I take 500mg of Hydroxyurea daily and I'm stabilized at 600,000 and no symptoms. There have been a few bumps on the road, but ET hasn't held me back too much. After being sedentary for a decade or two, I started distance running at age 39. It was a life-changer. Getting regular exercise gave me a huge energy boost and helped me lose a few pounds. I've run 5Ks, half and full marathons, several 50Ks, two 50 milers, and one 100-miler. Hydroxyurea has caused a few problems, including mild anemia, some fatigue and digestive issues. But all in all, things are going pretty good and I'm thankful for the health I still have, and also for the love and support of my wife and three children.
Will hydroxyurea drop Platecounts...?
Where as me I am taking hydroxyurea and aspirin from last one year and my Platecounts are still between 6 lakh to 8 lakh ...
And hydroxyurea have any side-effects?
@@ChokkaraManisha I'm not qualified to give medical advice, but I can just share how it has worked for me: In my case, about four weeks on 500mg of Hydroxyurea daily reduced my platelet count from 1,000,000 (platelets per microliter of blood) to 600,000. Levels have been stable since then, and I remain on 500mg of Hydroxyurea and 325 mg of aspirin each day. 600,000 is still high, but at that level I do not have any symptoms so we are just maintaining that. As far as side affects, I've had a few mouth sores and digestive discomfort that seem to be caused by Hydroxyurea, but both issues have been manageable.
This video from 4 years ago came up on my site. I have been doing a little "research" since I was diagnosed with
ET several months ago. I had been feeling very weak and they tracked it down to a JAK 2 mutation. i can see and hear the emotions you have gone through. How are you now?
My situation is different as I am 80 years old. However, it feels like a big loss to me because up till last year I was hiking in the mountains and swimming in the ocean. Now I have to really push myself to walk and swim in the gym pool. I must sound ungrateful because I have had a lifetime of being active and able, and yet I get pretty depressed at times because it was not a gradual loss from aging.
I am taking hydroxyurea and it has helped the platelet count but I suspect some of the side effects are similar to the disease symptoms. I do have some good days when I think I have conquered it, but it always comes back. which can be very discouraging.
Thank you for letting me share this. I would love to hear how you are doing..
Fran
I've been diagnosed with ET and tested positive with JAK2 mutation seven months ago. I am 66 and have refused to take Hydroxyurea due to side effects. The platelet levels are tested each month and keep rising, now at around 600 000 mark. My Hematologist says I am in the very high risk category as I had a thrombotic event seven years ago. Another event could happen: another blood clot, a mini stroke, heart attack or a bleed on the brain. I've decided to take the Hydroxyurea and begin next month.