Essential Therombocythemia

Hi, I'm 27 years old. I have been diagnosed wth ET in December 1994. M initial counts were above 1.5 million. My doctor initially put me on Aspirin & Hydroxyurea & keep on checking the counts. In 1998 I stated Anagrelide but develip Diaherra because of this. I have started Anagrelide with 0.5gm/day with a maximum dose of 3.0mg/day. Counts came down rapidly. I have been having fatiques alot with headaches some times. Gradually my HB & HCT keeps going up, around 16 HB & 47 HCT. I have been doing Phelebotmies since 2001 till 2007 (around 17 times) with an internal of 3-6 months.

 I have stopped taking Hydrea since 2001 till Decembere 2007 & counts were automatically below 1 million. During this phase I have been having fatiques & headaches & sometimes red spots on the body. I'm a working man & going to office daily & sometimes travelling too on international visits.

In Feb 2008, my counts went up to 1.8 million & than I started Hydroxyurea with 4 gm/day. Side effects were huge, my nails turns a little black & skin near nials were also dark. Counts even touched to 2.6 million & than cam down to 571,000 but when Hydrea were stopped they jumped to  1.1 million. I have been taking Hydrea but counts are still in the range of 1 million - 1.4 million. Now my doctor has advised to start Anagrelide again. As this medicine is not available in Pakistan very easily so I have ordered from Austria which will reach in next 4-5 days. Since Feb 2008, I have been doing CBC almost every week.

 Since last 4-6 months, I have been having Transmic Ishemic Attacks where I found my self totally lost for 10-15 seconds. I don't have burning effects on my fingers. Major side effects are headaches, fatiques & having pain in legs.

I guess I'm one of the most youngest in the world who have this disease. Please do share your side effects so that we all should know what is coming in the future.

Best regards,

Zeeshan J

Hi,

I really don't have any advice, because I am in the same boat.  But I wanted to let you know you're not alone.  I'm also 27, and have ET.  I was recently diagnosed, however have had elevated platelets since 1999. My particular side effects have a wide range unfortunately from headaches, unequal pupils, burning hands, EXTREME fatigue, red spots, bruising, bleeding, vertigo, fainting, etc.   It's all very frustrating--- the amount of time it takes for a dx (I saw my first hem/onc IN 1999....), the medications, the feeling like crap basically all the time, and then still attempting to live with as much normalcy as you can muster.  But, in the end all we can do is push along, try to do right by our bodies, and still take the time to "smell the roses" so-to-speak.  If you ever need to vent, feel free.  You're not alone.

 Dee