Hello everyone,
I was happy to find this board where those with ET can discuss their experiences.
A few months back a simple blood test at my doctors revealed elevated platelets (800+). He recommended I start taking aspirin and see a hematologist. Because I'm so healthy and symptom-free I promptly ignored his advice, thinking "surely I've had this all my life..it's just my body chemistry."
So I blew it off. A little while later, because of excessive work stress and so forth I had a nervous breakdown. I ended up back at my docs to get help and they said, "seen the hematologist yet?" Me: "nope! No plans to." Well they made me an appt that day so I thought "why not, I'll go."
I went to the hematologist and they confirmed my count at about 800K. My hematologist (who I really like) laid it all out, all the possibilities. I started to pay attention. I received a thorough ultrasound of everything internal then a bone biopsy (not so bad at all). This confirmed it: ET without JAK2. She asked me, "agrelide or hydroxyurea?" Although by then I had done a little reading, I was in no position to make that decision. She said, "let's start with low dose Agrylin and see where things go."
I started on 2 a day (1mg). 4 or 5 weeks passed, then my checkup yesterday had my count in the low 600's. She decided I needed to go up on the dosage to 1.5.
The first few weeks on agrelide were a little challenging. I had a lot of gas, I also had ringing in the ears and heart palpitations. These things eventually subsided, though today the palpitations were back because of the dosage increase. I think they'll settle down.
My strategy is to take most of my pills at night before bed (2), then the 3rd in the morning. That way I don't notice the palpitations, though I do seem to awake with a dizzy/anxious head..not sure if that's the drug or the general anxiety disorder I've been diagnosed with (on Lexapro for that).
Anyway, I just wanted to say "hello" and hope to hang out here and learn some things. My biggest question right now is, with the New England Journal of Medicine article of 2005 touting Hydroxyurea as superior to Agrelide, I'm wondering why I'm on Agrelide - if I should have chosen H. But my hema told me Ag is preferable because it reduces only platelets and not everything else.
Thanks for listening. Peace and good to you all.
Mark (41 yrs old)
I was happy to find this board where those with ET can discuss their experiences.
A few months back a simple blood test at my doctors revealed elevated platelets (800+). He recommended I start taking aspirin and see a hematologist. Because I'm so healthy and symptom-free I promptly ignored his advice, thinking "surely I've had this all my life..it's just my body chemistry."
So I blew it off. A little while later, because of excessive work stress and so forth I had a nervous breakdown. I ended up back at my docs to get help and they said, "seen the hematologist yet?" Me: "nope! No plans to." Well they made me an appt that day so I thought "why not, I'll go."
I went to the hematologist and they confirmed my count at about 800K. My hematologist (who I really like) laid it all out, all the possibilities. I started to pay attention. I received a thorough ultrasound of everything internal then a bone biopsy (not so bad at all). This confirmed it: ET without JAK2. She asked me, "agrelide or hydroxyurea?" Although by then I had done a little reading, I was in no position to make that decision. She said, "let's start with low dose Agrylin and see where things go."
I started on 2 a day (1mg). 4 or 5 weeks passed, then my checkup yesterday had my count in the low 600's. She decided I needed to go up on the dosage to 1.5.
The first few weeks on agrelide were a little challenging. I had a lot of gas, I also had ringing in the ears and heart palpitations. These things eventually subsided, though today the palpitations were back because of the dosage increase. I think they'll settle down.
My strategy is to take most of my pills at night before bed (2), then the 3rd in the morning. That way I don't notice the palpitations, though I do seem to awake with a dizzy/anxious head..not sure if that's the drug or the general anxiety disorder I've been diagnosed with (on Lexapro for that).
Anyway, I just wanted to say "hello" and hope to hang out here and learn some things. My biggest question right now is, with the New England Journal of Medicine article of 2005 touting Hydroxyurea as superior to Agrelide, I'm wondering why I'm on Agrelide - if I should have chosen H. But my hema told me Ag is preferable because it reduces only platelets and not everything else.
Thanks for listening. Peace and good to you all.
Mark (41 yrs old)
