Essential Thrombocythemia: Looking for information and support

Hi.....my name is Claire and I also have ET. I have been taking Hydrea for almost five years. For the most part things are good. The meds keep my platelets at a reasonable level and I have blood work every month to make sure they stay that way.
Side effects are, of course, major fatigue and still some itching. I listen to my body and rest when I am having a day were I know I can't go out or really do anything physical.
I very seldom have nausea from the Hydrea so I try to stay positive and grateful for each GOOD day.
Good luck with your journey, I know it can be scary but I hear of others who have had ET for years and are doing well.......best regards....Claire

Just a heads up ?maybe? I got my second shingrix shot and a week later had blood test for my ET. My platelets dropped over 150,000 from previous blood test, with no change to my HU. I did some research and did not show up under shingrix or ET, but it did show up in research for low platelets, so just thought I'd pass it along. I have link for research study if you're interested. I sent research to my hemo/onco

As I remember they were in the nine hundreds. I was prescribed hydroxyurea and took it for years seeing the hematologist monthly. No symptoms at all. A year or two ago I became anemic with low red blood count. That’s when it got complicated. Had a bone marrow biopsy and discovered it wasn’t making any red blood cells. The HU kept the platelets down but inhibited red cells. Second opinion and switched to Anagralide but same thing Now I see my hemo every 2 or 3 weeks and get a unit of blood whenever my hematocrit drops to 22 or lower. Lately every 2 or 3 weeks. That takes me up to 24 or 25. I can function quite well at those levels. 27 is as high as it’s ever been. 45 is the low end of the range.
I’m ok with doing it the rest of my life which I expect to be a number of years. A small problem considering I have no pains or other problems.
I hope this helps

When I was first diagnosed last autumn, my platelets were 760. In a couple of months they dropped to 630 but since have increased to 830. My Hydroxyurea was recently increased to try to bring them down. I'll know soon whether the increased medication is enough. I'm been taking 325mg of aspirin daily since I was diagnosed. I'm 74 years old.

with ET taking HU, I found my skin got very dry and itchy if I took hot showers, so my showers are less hot now, and my skin not as dry and itchy......my 2 cents
So while hot tub might feel good, your skin might not like it.....

Thanks for your reply. My shortness of breath is a complication from my cardiac microvascular disease which I have read can be a complication of essential thrombocythmia. How high were your platelets when you were first diagnosed if you can remember and did they ever go up and down?

Yes, people will say cruel things sometimes. I chalk it up to their being so afraid of illness themselves that they are in denial about the inevitability of anything happening to them. I guess they think that if they do everything "right" they'll live forever.

Take care of youself, do what the doctors recommend, and never treat other sick people that way yourself.

Is it safe to use the Hot Tub when taking Hydroxyurea?

See my post above. I’ve had ET for at least 30 years with no symptoms of any sort. I believe it is a cancer but your hematologist will take blood tests and will adjust medication to control platelets and red blood cells. I wonder about chest pains and shortness of breath though. They don’t seem to be symptoms of ET. Good luck and you’ll see it’s not so bad.

Good reply. It is a chronic blood cancer, no denying. My doctor told me that as long as I take medications, I should have a normal life expectancy. But it is a VERY SERIOUS disorder, not to be taken lightly. Without medications stroke or heart attack could result, and it can affect your immunity and general well being.