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    Old 12-11-2006, 07:23 PM   #16
    Genessa
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    Re: Platelets/high

    Hi,

    I take medication - hydroxyurea and 81 mg aspirin daily. The Hu has given me back my life. Some people are asymptomatic at over 1 million, some are not.
    I have a history of stroke in the family, plus I have suffered with headaches my entire life - but what motivated the doc to prescribe meds for me was a killer headache - the kind where you want to bash your brain into the wall until it stops or drill several holes into your head - combined with sky high blood pressure.
    The unexpected bonus with taking the hu was a lifting of the fog of fatigue that I had been plagued with for over 6 months and that I had NO IDEA was due to my (supposedly to me) asymptomatic high platelet counts.

    So now, I can go for walks, and play with my granddaughter and cook dinner and clean the house and be really productive at work, instead of just functioning.

    Not every med is for everyone, but sometimes they are good for some.

     
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    Old 01-09-2007, 01:29 PM   #17
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    Re: high platelet count

    exactly ,,,, last poster if you are symptom less then no need for the meds, but the headaches kill, and i have also already had a dvt DEEP VAIN THROMBOSIS---a blood clot that can cause pulmary embolism , brain anurism , stroke, or heart attack if the clot was to shift to any of theses places ( some one asked a few back) anywho i was in the 800 and 900s for a few years , when i went over a million and stayed there for awhile that when i started the agylin that didnt work now i am on the hydrea and thats working i am steady 600 now , and yeah when i dont take them here and there its goes up fast
    anywho my point
    i have 3 children under the age of 8 and i am not chancing leaving them early because i dont want to take meds , a medical bracelet is a great idea , i always say that i will get one but never get around to it , if you feel great and never had any complications from it than no meds but for us who are one them , its because we have all had some sort of complication from the disease at one time or another . GOOD LUCK everyone
    it sucks to have to go and get ***** every 2 weeks but i will sacrafice that to have full lifetime with my family. I dont want to die from something i could have worked to prevent

     
    Old 01-09-2007, 01:29 PM   #18
    tomatoes49
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    Re: high platelet count

    exactly ,,,, last poster if you are symptom less then no need for the meds, but the headaches kill, and i have also already had a dvt DEEP VAIN THROMBOSIS---a blood clot that can cause pulmary embolism , brain anurism , stroke, or heart attack if the clot was to shift to any of theses places ( some one asked a few back) anywho i was in the 800 and 900s for a few years , when i went over a million and stayed there for awhile that when i started the agylin that didnt work now i am on the hydrea and thats working i am steady 600 now , and yeah when i dont take them here and there its goes up fast
    anywho my point
    i have 3 children under the age of 8 and i am not chancing leaving them early because i dont want to take meds , a medical bracelet is a great idea , i always say that i will get one but never get around to it , if you feel great and never had any complications from it than no meds but for us who are one them , its because we have all had some sort of complication from the disease at one time or another . GOOD LUCK everyone
    it sucks to have to go and get ***** every 2 weeks but i will sacrafice that to have full lifetime with my family. I dont want to die from something i could have worked to prevent

     
    Old 01-15-2007, 09:00 AM   #19
    probole
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    Re: high platelet count

    Quote:
    Originally Posted by tomatoes49 View Post
    exactly ,,,, last poster if you are symptom less then no need for the meds, but the headaches kill, and i have also already had a dvt DEEP VAIN THROMBOSIS---a blood clot that can cause pulmary embolism , brain anurism , stroke, or heart attack if the clot was to shift to any of theses places ( some one asked a few back) anywho i was in the 800 and 900s for a few years , when i went over a million and stayed there for awhile that when i started the agylin that didnt work now i am on the hydrea and thats working i am steady 600 now , and yeah when i dont take them here and there its goes up fast
    anywho my point
    i have 3 children under the age of 8 and i am not chancing leaving them early because i dont want to take meds , a medical bracelet is a great idea , i always say that i will get one but never get around to it , if you feel great and never had any complications from it than no meds but for us who are one them , its because we have all had some sort of complication from the disease at one time or another . GOOD LUCK everyone
    it sucks to have to go and get ***** every 2 weeks but i will sacrafice that to have full lifetime with my family. I dont want to die from something i could have worked to prevent

     
    Old 01-15-2007, 09:25 AM   #20
    warpmps1
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    Smile Re: high platelet count

    Hi I am 34 yrs old female, with a platelet count of 1.4million. About 16yrs ago they were 3.2 million. They had me on medicine for about 6months to bring them down. They went down to a million and stayed the same through 2 pregancies. Right now I am having several systems such as fatigue, headaches etc....

    I am currently taking Hydroxyerea, about 4 months ago they were at 737k but they went back up as of last week to 1.4million, I don't know what is going on. But they are monitoring me week by week. I hate the medicine it makes me sick but dealing with it I want to see my kids grow. I have a great Hemotologist and I trust her. I hope everyone has the right Dr. that they can trust. It's scary but you will get through it.

     
    Old 01-22-2007, 07:02 AM   #21
    probole
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    Re: high platelet count

    I speak for my wife.
    She was diagnosed with ET in 1995. At that time platelet count was around 1.7m and had a clot in the portal vein.
    She started taking Hydroxyurea and was monitored closesly. At of today she keeps seeing her same ematologist, which she trusts.
    After Anagrylin was released to the public, she has been taking a combination of both medicines. She keeps in the 400's to 800's range and doesn't have the ET syntoms (fatigue, headaches, ....).
    WE learned to live with ET and live a normal life.
    Due to the portal vein clot, she had to have an emergency surgery to aliviate internal bleeding. She had to have a portacava shunt to aliviate the internal bleeding.
    In our case we keep good control of platelet count by blood work weekly when high and every three months where normal. She attends a Dr. visit when with normal levels every three months.
    We are always in search of new alternatives.
    So far, we keep the traditional medicine alternative as our number one priority. We have to kids. She has a normal life.
    Our best wishes.


    Quote:
    Originally Posted by warpmps1 View Post
    Hi I am 34 yrs old female, with a platelet count of 1.4million. About 16yrs ago they were 3.2 million. They had me on medicine for about 6months to bring them down. They went down to a million and stayed the same through 2 pregancies. Right now I am having several systems such as fatigue, headaches etc....

    I am currently taking Hydroxyerea, about 4 months ago they were at 737k but they went back up as of last week to 1.4million, I don't know what is going on. But they are monitoring me week by week. I hate the medicine it makes me sick but dealing with it I want to see my kids grow. I have a great Hemotologist and I trust her. I hope everyone has the right Dr. that they can trust. It's scary but you will get through it.

     
    Old 06-14-2007, 02:59 PM   #22
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    Arrow Re: high platelet count

    Quote:
    Re: Platelets/high

    --------------------------------------------------------------------------------

    i don't understand why everyone seems to be or have taken meds for platelets way lower than mine when i have never taken anything but half of a baby aspirin and even then, when i remember which is probably once a month

    i've a feeling there are many kinds of ET or some people just do whatever their doctors suggest without demanding to know why they should and what the risk is to saying no

    are doctors out there using us as guinea pigs? i don't understand why some of us are on meds, while others like me with a platelet count of 1.4 MILLION take nothing at all and likely never will no matter how ridiculously high they go..are we blaming all our headaches, muscle aches, tiredness on ET or is it possible to get a headache, sore muscles and be tired just because we sometimes get a headache, sore muscles or get tired for nothing more than lifestyle issues or a bad day? what am i missing here......? i don't understand why people with 1/10th of my platelets are on medication.........what are the doctors saying, why are they putting meds in your bodies? it seems to make no difference and i have been reading such message boards for at least 8 years, on ET

    maybe, just maybe we don't fit into any medical box and they are (the doctors) pushing drugs on us???? i don't know, i just question everything and unless i get a real answer as to why i should take some drugs, i err on the side of my lifestyle is dangerous enough already.......without adding powerful drugs to an aging body (i am 53)

    there is such a wide variety of medical interventions for the same blood disorder, it boggles my mind

    i am probably the one person with the highest levels of platelets on this board.........and yet i take nothing and have zero symptoms...........i'd like someone to explain to me why i have ET and am fine while others are taking drugs that do not seem to help........have any of you suffered heart problems or anything else that led to the drug intervention.....or is it all precautionary measures just in case?

    just very curious about all these different ways to solve an unsolvable problem for a disorder (its not a disease by the way, its a disorder) that is uncurable to begin with, unknown by most physicians and now i see new research that says it may be caused by our genes..........though it may be caused by genes that mutated after birth (whatever that means)
    [B]


    I also live in Ottawa and I just turned 50. I was also just diagnosed with ET My platelets count when detected was at 1,500 in February and it continues to rise (currently at 1,800). As many other people on these board I also have a hypo-thryroid condition (for 22 years) and have been suffering with migraines and headaches for over 20 years. Prior to my blood test I have been feeling extremely tired for a few years. I attributed it to the onset of menopause until I finaly had the blood test. When refered to a blood specialist he did a bone marrow test which showed I had no iron in the bone marrow, however the blood test at the time didn't show a low iron (???). He put me on mega iron supplements but now my iron is starting to drop (as indicated by blood tests) and my platlets continue to rise. Last week I was put on hydroxyrea as my blood specialist told me that the platelets wouldn't go this high because of the iron deficiency. I am feeling very nauseated, tired and depressed. I am very concerned about taking this drug. I also have to have weekly blood tests. Do the side effects eventually go away? How long does it take before you start feeling all of them?

    Does anyone ever get better? Is there anyone out there who has had an iron deficiency and once that was corrected the platelets went back to normal levels?

     
    Old 06-15-2007, 01:03 PM   #23
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    Re: high platelet count

    Romeo,
    I have a condition called ITP - where my body sometimes attacks my platlets. I had my spleen removed in 1995 to correct it, and it did, but now my platelet count is, as a result of the surgery, higher than normal.

    I also developed a condition called AIHA - autoimmune hemolytic anemia, where now, my body attacks my red cells. Anyway, when my AIHA is acting up, my platelets go way, way up and my hemoglobin and iron levels go very low. I'm wondering if your immune system is running amok. My hematologist told me that sometimes high platelets indicate an out of control immune response, and that is absolutely true in my case. When my anemia is bad, my platelets get higher - and when my anemia is bad, I get headaches, terrible ones and terrible fatigue.

    It's definitely something to look into.

    Jill

     
    Old 06-30-2007, 09:53 PM   #24
    jtc
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    Re: high platelet count

    Very very happy to find this forum. My husband was diagnosed with ET in Aug 2004. He's asymptomatic - that's why we were all surprised to find during a routine blood test that his platelet was 2,300,000. Our family doctor was surprised and we were referred to a hematologist immediately. Had a Bone Marrow test to rule out anything else - also had some chromosomal mapping test done. Essentially, he was diagnosed with ET. Has been on HU for the past 3 years, with 81mg aispirin. Platelet has lowered to 380 to 450 level. HU dosages was titrated and re-adjusted during the 1st 2 years. So far, so good. No visible side effects. His nails (both hand & toes) blacken during the 1st year, but now ok. We asked about Anagrelide, but his hematologist said HU is well-tolerated for long term effects, but of course, would still rather do without the drug - we all do, don't we? Besides, his doctor said he's doing well with HU and since Anagrelide has more side effects, would rather he be maintained on HU. Any opinions? Thanks to all!

     
    Old 09-02-2007, 08:36 AM   #25
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    Re: high platelet count

    Quote:
    Originally Posted by japlopper View Post
    Romeo,
    I have a condition called ITP - where my body sometimes attacks my platlets. I had my spleen removed in 1995 to correct it, and it did, but now my platelet count is, as a result of the surgery, higher than normal.

    I also developed a condition called AIHA - autoimmune hemolytic anemia, where now, my body attacks my red cells. Anyway, when my AIHA is acting up, my platelets go way, way up and my hemoglobin and iron levels go very low. I'm wondering if your immune system is running amok. My hematologist told me that sometimes high platelets indicate an out of control immune response, and that is absolutely true in my case. When my anemia is bad, my platelets get higher - and when my anemia is bad, I get headaches, terrible ones and terrible fatigue.

    It's definitely something to look into.

    Jill
    hi,

    i had my spleen removed too (1985), tell me please, how is your platelet count in present, as a result of the surgery (number of platelet)?
    thank you

     
    Old 09-03-2007, 09:44 AM   #26
    probole
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    Re: high platelet count

    Quote:
    Originally Posted by jtc View Post
    Very very happy to find this forum. My husband was diagnosed with ET in Aug 2004. He's asymptomatic - that's why we were all surprised to find during a routine blood test that his platelet was 2,300,000. Our family doctor was surprised and we were referred to a hematologist immediately. Had a Bone Marrow test to rule out anything else - also had some chromosomal mapping test done. Essentially, he was diagnosed with ET. Has been on HU for the past 3 years, with 81mg aispirin. Platelet has lowered to 380 to 450 level. HU dosages was titrated and re-adjusted during the 1st 2 years. So far, so good. No visible side effects. His nails (both hand & toes) blacken during the 1st year, but now ok. We asked about Anagrelide, but his hematologist said HU is well-tolerated for long term effects, but of course, would still rather do without the drug - we all do, don't we? Besides, his doctor said he's doing well with HU and since Anagrelide has more side effects, would rather he be maintained on HU. Any opinions? Thanks to all!

     
    Old 09-03-2007, 09:55 AM   #27
    probole
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    Re: high platelet count

    JTC,

    Please keep posting changes with your husband's condition.
    My wife's profile in a way is similar as of your husband.
    We live a normal life. She keeps in the range of 400 - 700, with no side effects.
    She was diagnosed in 1995 with a platelet count over 1 million and a portal vein clot.
    In the year 2002, she had to undergo surgery, a porto caval shunt to fix internal bleeding.
    She takes a mixture between HU and Anagrelide.
    Just HU was affecting White (WBC) to the minimum limits.
    She undergoes blood work one every three months to check platelet count.
    Good luck to all.

     
    Old 09-12-2007, 09:07 PM   #28
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    Re: high platelet count

    I'm 22, and when I was first notified by my doctor about my high platelets was after I had my first child at the age of 19. I didn't think anything of it until I just recently had my 2nd child and lost her due to an infection. After I gave birth the doctors did blood test to see if anything was wrong and my platelets were up to 800. Well they did more tests and brought me in weekly for a month to do more tests. they were up and down from 700 - 800. They thought it was an infection so they put me on antibiotics to get rid of anything that I could have. Well after the week of antibiotics they did another and they were 700 something again. But of a military wife my husband and I had to move cross country so my doctor requsted and hemotologist and to that point I was in there everyweek doing blood tests, ct scans and a bone marrow test. They really couldn't figure out anything and said that I had ET. They put me on a Kemo drug for a week to see if any changes and they didn't drop a bit. My doctor warned me about my platelets getting over a million that I could get a blood clot or a stroke. so I warn you guys to be very very careful and keep an eye on your selfs. I have been getting bad bad migrains and my platelets won't go down. I have had cancer screens and breast masses removed thinking they had part. Nothing has helped so if anyone has any idea please please help.

    Thanks
    Candy
    Proud Wife of SPC JAKE JANKE
    NC

     
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    Old 09-22-2007, 09:08 AM   #29
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    Re: high platelet count

    Hi. I found out I had ET in 2001 after my doctor noticed my platelet count in 2000. Around this time I had migraines, rashes, hives. I did not feel good. I was sent to a Hem in 2001 at the same time was sent to an allergist. Come to find out all my symptons were related to ET. The only difference is I itch in water. I have done this my whole life. My platelets where not high until 2000. Itching is a symptom of PV not ET. These are all MPD's. Because of the itching I am treated with having a pint of blood taken about every 3 months this relieves the itching. I also have had a bone marrow biopsy, and have had two JAK2 test, both negative. My bone marrow is abnormal. This is confirmation of ET. My hem has tested for every other disorder to rule out everything else. My hem is located in my town. Once a year I go to MD Anderson to see Dr. V. He is a specialist with blood disorders. Since 2002 I have not had a migraine (I never had one before 2000) no unexplained rashes, hives. I itch in water so my hem my Et is converting to PV. Not showing in my blood work though. So I have ET and in the 50% of ET patients that are JAK2 negative. I take asprine daily, have blood work done every 2 months, have a pint of blood taken to relieve the itching and will have a yearly bone marrow biopsy to watch the progression of the marrow. There is a support group online if you are interested. It has alot of information on it. My platelets have ranged from 500-773. If they go over 800 I have been told I need to take medication to protect from clots & stroke. Before I had this I had never heard of anyone having this. No one in my family has this. Hope this info helps. Find a hem you feel comfortable with. Ask lots of questions. See about having a JAK2 test and a bone marrow biopsy.

     
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