Ups and downs of Essential Thrombocythemia!
February 8th, 2009 . by kanettac
Hi Everyone, Two months ago my doctor told me to stay on the same Hydroxurea dosage of 500mg. daily even though my platelets were steadily increasing and had reached 887 and guess what? My platelets went down over 100 points to 785. I just couldn’t believe it. Also, my anemia was gone. Apparently I am one of the people who get anemic taking a higher dosage of Hydroxyurea. My doctor said that he was going keep me on the same dosage of Hydroxyurea because I was doing so well. He also cautioned me that if I experienced any of the pre-treatment symptoms of ET such as burning sensation in my fingertips and toes, painful leg aches, muscle weakness, (bright light) colored spots in my vision, also (white light) spots that were like I was looking through a jagged piece of glass, etc. to call him immediately. So far, I am doing great. I hope I don’t have to call him or even see him for obvious reasons. I have another appointment in two months and that will be soon enough. I feel good now and really hope it stays that way. I am not fond of taking any kind of medicine. I really don’t know why I feel that way. However, I am all for it if it will prolong my life.
For all of you out there who are suffering with this disease, there is hope. They are working on a cure everyday. No one knows why we have ET and no one knows how we can get rid of it. For now, we just have to learn to live our lives the best we can and hope that they will soon come up with a cure. WOULDN’T THAT BE NICE!
Don’t forget to post a comment. I really love to hear from you. I look forward to it everytime I check my blog. Kanetta
I have had similar good experience with hydrea. it took a little while (couple of months) to reduce the platelets so the dr. upped the dosage to 500 mg 2x daily. then my plateletes dropped from 800 to 285. it is a little scary to me because what if they keep dropping. but tomorrow i will be weaned off hydrea and starting pegasys. little afraid of that too since I have been doing so well on the hydrea. it’s just that i’m 49 and they are afraid of long-term use. good luck to you.
I have et and have been on hydrea for 3 years, before that I was on Agrilyn, which did not agree with me. I was wondering if anyone put on weight from hydrea, i cant seem to lose 10 extra pounds. I am also on Coumadin, because I had a blood clot in the colon, I am a high risk person.
hi all, i was diagnosed with ET march 2008 with platelets at about 500, also jak 2 positive. i am 61yrs old and my dr. is waiting until platelets reach 600 before starting me on hydrea i take 1 low does asprin a day and my platelets range from 500-580, a few weeks ago they were 525. i am nervous about having to start with hydrea because of side effects, but try not to worry about it until i have to start taking it..who knows i may tolerate it fine. i have migraines but my entire family has them and since i have started a new ( bio identical ) estrogen and a lower dose they are much better. my right leg aches at times, but i have had that off and on for at least 2yrs and it seems to do better if i sleep with a pillow between my leg, so not sure that has anything to do with my ET. i am going to the patient mpd conference at mayo/ phoenix next week end, hope to learn alot and will pass it on. good luck to all.
I was diagnosed with ET in 2004.We didn’t do much about it except watch my blood levels and my platlets until I had a clot in a vein and lost 3 pints of blood.I have JAK2 and another clotting problem called Factor V Leiden.I was then put on Hydroxyurea,1000 my daily except one day it is 1500mg.Everything seems to be doing well except the fatigue.I haven’t figured out if I am as fatigued as I had been for so long or if from going through that I have gotten so used to it. Did you have symtoms before you found out you had this or did you find out after a blood test for other reasons? I found out because I was getting hives on the soles of my feet,always being short of breeath whenever I did something and my calves would hurt whenever I worked.Of course the doctors thought it was blocked arteries but after an angiogram they knew it wasn’t that.I also was put on blood thinner.I know I will keep fighting this though..I am going to rule it instead of it ruling my life.It is great to see you put your blog on here.Hopefully more people will become aware of this ET
Hi Kanetta and everyone
It’s me again. Hope all of you are ok.
I was put on Anargrelide for 3 months. My platelet rose from 280k to 480k (last couple weeks) but doc said it was okay if the rising was not more than 600k. She said Anargrelide is better for me because I was diagnosed at only 45 and I have to use long term medication. I read about the comparison of Anargrelide and Hydroxyurea and found some defect of both. I have palpitation sometimes after Anargrelide used and also was tired as well. I’m not sure that it is appropriate to me or not ?