People living with ET and taking Hydrea: Anybody setting records?

Honestly, I don't know if I have any tips! It was a really rare condition back when I was dx by bone marrow biopsy in the early 90s, and there really weren't very many support groups on-line from which to gather information. I was initially very concerned. At that time, anagrelide was new, and the concerns about long-term usage of hydroxyurea were very high. I used HU for awhile, then tried AG, but had terrible side effects from AG, so went back on HU. I was being treated by a hematologist in Ft. Wayne, IN but decided to travel to Rochester Mayo to see an ET specialist there. He felt that being as young as I was (early 40s by that time) I could manage with only daily 81 mg aspirin. So, I went off HU but soon after had some frightening TIAs. That helped me decide HU would be the best option for me. A decade or so ago I made an appointment with Dr. Tefferi at Mayo Rochester to see if my current treatment protocol was best for me and to learn if I had the JAK2 mutation (which I do). He said I'd likely die of something else before I'd die of ET, so stop worrying! 🙂 Therefore, since that time, I've basically taken my 500 mg HU and 81 mg aspirin daily, gone for quarterly CBCs and regular checkups with my regular hematologist and lived normally. I doubt that anyone much knows I have this blood condition. My advice? Stay active and live happily. If you begin to have an issues, your body will tell you. Otherwise, there are much more serious things in my life to worry about! 🙂 I'm happy to field questions, tho, as it has been a journey with definite ups and downs. It's most frightening when one doesn't have information, I firmly believe!

I’ve had ET for at least 30,maybe 40 years a kept my platelets down with Hydroxy with no symptoms or side affects until about 4 or 5 years when my anemia showed up. I was switched to Anagralide because the Hydroxy seemed to quit working. I need red blood cell transfusion every week or three I feel much better after them. Still not feeling like running around the block but I can tell when I’m needing blood. The threshold for getting blood is 22 hematocrit and the transfusions raise it to 24, 27 and once 30. 27 and 30 are good for 3 weeks. I can do anything I want, just not for very long.

I’ve had ET for at least 30,maybe 40 years a kept my platelets down with Hydroxy with no symptoms or side affects until about 4 or 5 years when my anemia showed up. I was switched to Anagralide because the Hydroxy seemed to quit working. I need red blood cell transfusion every week or three I feel much better after them. Still not feeling like running around the block but I can tell when I’m needing blood. The threshold for getting blood is 22 hematocrit and the transfusions raise it to 24, 27 and once 30. 27 and 30 are good for 3 weeks. I can do anything I want, just not for very long.

I’ve had ET for at least 30,maybe 40 years a kept my platelets down with Hydroxy with no symptoms or side affects until about 4 or 5 years when my anemia showed up. I was switched to Anagralide because the Hydroxy seemed to quit working. I need red blood cell transfusion every week or three I feel much better after them. Still not feeling like running around the block but I can tell when I’m needing blood. The threshold for getting blood is 22 hematocrit and the transfusions raise it to 24, 27 and once 30. 27 and 30 are good for 3 weeks. I can do anything I want, just not for very long.

Finding a balance between medications and their side effects can sure be challenging. I’m sorry to hear you’re so fatigued with taking Hydroxurea at the recommended dosage. I know right now you don’t have a choice because of the upcoming surgery. Your surgeon doesn’t want you to experience any blood clotting so it’s important to get your platelet level down to a healthy limit.
After surgery and recovery, maybe you can speak with your hematologist about adjusting your dosage to a different schedule? I know some members have mentioned their doctors have allowed them do something like alternate 1 pill per day/2 pills per day. Or 1 pill daily but twice per week they add the extra pill. It can minimize the side effects but also maintain a healthy platelet level.
In the meantime I hope your numbers get to a happy spot so that you can go ahead with your surgery! Do you have a target date for surgery?

I have am 69 yo and been living with ET for 21 years.I have been on Hydrea and aspirin for 9 years. I am doing well. My platelets range around 600,000- 800,000. I cannot seem to get them below 550,000 without lowering all the other blood cells to a dangerously low level. I take hydrea 1,000 milligrams 4 days a week and 1,500 3 days a week. I do get tired but I just rest and read or watch movies and try to enjoy life. I walk and do yoga but I am thinking of adding swimming a couple of days a week. I am glad you are at the 30 year mark. I really have to follow all the best advise given in order to live well. For example, my body, mind and liver will not tolerate any alcohol, I have to drink at least 90 ounces of water per day, I need to exercise, I need to stay calm and centered and continue in therapy, I need to eat well and avoid gluten, and sugar and keep the dairy to a minimum. If I do these things I do not suffer as badly from pain, numbness, headaches and many other strange symptoms. It gives me hope that you are doing so well at 30 years. Thanks for posting. I wish you all the best.

I have been living with ET since my 50's, I am now 72. I didn't start taking any meds until I turned 60, as I was told this was a risk factor for stroke and blood clots. I have been taking hydroxyurea with an aspirin for 12 years. I am supposed to take 2 500MG capsules every day but I only take 1 as I cannot take the fatigue, drives my hematologist crazy! I have managed to live an active life without limitations until recently.

I am in otherwise good health but have recently had a hernia which I want repaired. It has now turned into an event as my platlet count with the 1 capsule of urea was 963. Surgeon won't proceed until count is under 500. So I am now on 3 capsules per day for the next few weeks. I am so tired I can't function.