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Old 12-07-2004, 11:31 AM   #1
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Nicole326 HB User
Essential Thrombocytosis (high platelets)

Hello. I am 34 years old and was diagnosed with ET almost 4 years ago. I was unaware of high platelets and it occurred almost overnight! I was confused and sent in for a bone marrow test to rule out cancer. I was told I had ET and had to go on Agrylin. I am up to 2-3 pills a day. My platelets have been going up though and I am not sure why. I am looking for anyone else who has this disorder to hear your experiences with this medicine or an alternative.

Also, does anyone know what causes this. I was told.. "No one knows" - that was encouraging
I would appreciate any feedback!

Thanks.
Nicole

 
Old 12-09-2004, 06:09 AM   #2
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undercoat HB User
Re: Essential Thrombocytosis (high platelets)

I too have essential thrombocythemia. I am 43 and my platelets are between 577 and 730. I too had a bone marrow test which confirmed that I had ET.

Why are you taking medication? Did you have a thrombotic event, ie, a heart attack or stroke? You should read up about ET as thinking now is that if you have a platelet count of less than 1500 and are low risk (ie, young and have not had a thrombotic event) then you should be treated with low does aspirin only. I can't take aspirin so I take Plavix instead. My platelets were picked up on a routine blood test 18 months ago and I don't have any symptoms. How high are your platelets?

I have been through all sorts of hell worrying about platelets, but feel a bit more relaxed at the moment. I realise though that if my platelets started to climb, I would be totally freaked out again. It is stressful to go to the haematologist and I worry the night before. They don't know why people have ET and of all the MPDs it is the best one to have - although I would rather not have any and not know anything about it.

I would be interested in knowing how things are - if your platelets are going up, maybe it is time to have another BMB - but hey - I am just a patient, so be guided by your haem.

 
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Old 12-09-2004, 10:54 AM   #3
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Re: Essential Thrombocytosis (high platelets)

My sister has ET. She has gotten good help from the Mayo Clinic in Rochester, MN. she takes a different drug. sorry I dont know how it is spelled but sounds like ''anakrilide''. her count get up over 500,000. she has had this for 20 yr & it has caused many other health issues.

 
Old 12-12-2004, 07:47 PM   #4
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regor201 HB User
Re: Essential Thrombocytosis (high platelets)

500,000 or 500 for short is not a particularly high platelet count. Most Hematologists would not put parients on medication at this level. What kind of health issues do you think were caused by the ET?

 
Old 02-10-2005, 06:47 AM   #5
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Re: Essential Thrombocytosis (high platelets)

Hi there! I also have ET and am 48 years old. I have had it since at least 1992 but think it goes back further. I have not had many health issues with it. My platelet count has risen substantially in the past 3 years which really bothers me! To reiterate what someone said on an earlier post, usually doctors do not treat someone with a count of 500,000 unless there has been a thrombotic event or some bad symptoms. I am holding off on treatment for as long as I can. I know that some are in disagreement with this opinion but I really don't feel comfortable about the available meds. for our condition. Up to this point I have been feeling fine and take 1 baby aspirin a day.

 
Old 02-11-2005, 06:38 AM   #6
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Re: Essential Thrombocytosis (high platelets)

i also have ET
I was idagnosed in august after my bone marrow biopsy
then a week later i found out i was pregnant
i took my baby asprin everyday , and last friday i was admitted in the hospital with a DVT (deep vain thrombosis) in my femeral vain (in my groind )
my left leg was completely blue
turns out all the asprin may not have beeen able to prevent this
so now i am on Lovenox a diffrent blood thiner
where you have to get a shot in the belly every day for 3 to 6 months ( yes my poor pregnant belly )
and they dont know how long it will take the clot to go away
everyones diffrent and this could be weeks
so i was released on wed and am on bed rest , with limited activity
to assure the clot doesnt travel anywhere unsafe

my platletes were about 850 at the highest and are now right below 400
but hemotoligist say that its common for them to lower in pregnancy
i thought i was fine
turns out you still have to be carefull
TAKE YOUR ASPRIN PEOPLE beacuse this is so not fun

Last edited by tomatoes49; 02-11-2005 at 06:41 AM.

 
Old 02-21-2005, 03:48 PM   #7
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Re: Essential Thrombocytosis (high platelets)

I have just decided to go on line to hear about other cases. I too have ET and my
my count at the present is 1333000.00 (yes over one million)and I was diagnosed
in 2001. At that time they were 125000.00. The doctor said some times it is hereditary. I don't know if that is so because I don't know my father. I have been
on agrylin off and on since 2002 and I suffer severe headaches with it. Every year I get a bone marrow biopsy. At this time the doctor is going to switch my medication to Hydroxeria. I am afraid o f this medication because of the side affects ( which are, rash, lukemia, vision lost headaches,.etc....). Mine is at an alarming number, so if you get any information please let me know. Also when I was on agrylin I had to take five a day in order for my count to go down. The pressure from the meds was too much to handle. I wanted to cut my head off every day.

 
Old 03-01-2005, 01:21 PM   #8
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Wink Re: Essential Thrombocytosis (high platelets)

Hi, I am 33 years old and was diagnosed with ET last week after a bone marrow biopsy. Last Wednesday my count was 520 and yesterday at my follow up it was 890. I have had minor aches and pains here and there in my joints (wrists and behind the knees) and dizziness/vertigo type feeling sometimes. But no swelling. My Doctor at Mt. Sinai is going to speak with her other colleagues because she is not sure whether or not she wants to put me on hydroxurea. Her concern is that my count is fluctuating so much in such a short period of time. I do take my baby aspirin every day. I am uneasy about taking any meds, especially a chemotherapy drug. I have not had a thrombotic event. I was hospitalized last August for hiatal hernia and while in the hospital my count was 700 which was not alarming at the time because I was sick. Before this I had no medical conditions or problems and unfortunately I never got a physical or bloodwork done for many years because I always felt great so I have no way of knowing how long I have had this. Although, I have always been a blood donor until a little less than a year ago and I would think that it would shown up when they tested the blood so I assume that I acquired this within the last year. I would hate to think I could have harmed someone else. It is not hereditary in my family on either side. It is unnerving to think of the possible risk factors and not having any control over this but I am thankful that it was not something worse like cancer. I have been researching MPD's/ET on the internet but unfortunately there's just not a lot to learn about it. I wonder if it is really as rare as they say or if there are lots of others that don't have symptoms and don't have bloodwork done regularly and are none the wiser. Just a thought. Its nice to have others to talk to about this. Any feedback is appreciated. thanks, Kim

 
Old 03-02-2005, 05:44 AM   #9
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Re: Essential Thrombocytosis (high platelets)

Hi,

I have just found this site. My husband is the one who has ET and was diagnosed in November 2003. In answer to a comment by Hazeleyes43 about severe headaches. My husband too was suffering it wasn't until his platelet level was on the decline that they started to go. Now his level is at a safe level his headaches have gone.

He has been on Hydroxurea (Hydroxycarbamide) since January 2004 and this is what's brought the level down. Yes, there are side effects but at least the drug does control the platelets. You do need help to control the level its out of your control. What's the alternative. It was a heart attack for my husband. (before his MI you would never guess he was the type to have one. It was ET that caused it) His GP never followed up a high count in 1999, if he had of done then he would have been diagnosed sooner and maybe his MI would have been prevented. Not taking the drug was not an option for my husband. We have to trust the professionals until someone can prove otherwise. Dark Chocolate and Red Wine have been linked to helping reduce the platelet level. Cheers.

 
Old 03-23-2005, 08:38 AM   #10
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Re: Essential Thrombocytosis (high platelets)

Hi everyone,just joined the site what a comfort to me reading your notes,Had a stroke 3yrs ago due to head abcesses am now p/sighted an have left sided w/ness.2yrs ago d/nsd with un/thyroid have recently had a venogram still awaiting results,also raised pc on last blood test. Am now waiting for app, to see heamo count was 680 very low to some of you,am feeling tired an achy a lot have been since the stroke My doc has just informed me [going thru my notes] that my pc was really very high 26yrs ago,nothing was done back then about it

 
Old 03-26-2005, 09:25 AM   #11
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Re: Essential Thrombocytosis (high platelets)

Hi there,

One of the older threads on ET had a poster who said that he takes baby aspirin every day and every 3 months or so goes to donate platelets. He wrote that he feels better for a long while after doing this. Perhaps this is an option to prevent any episodes? I know that would be my first option before taken any of the medications. Just a thought.

Jen

 
Old 03-26-2005, 02:14 PM   #12
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Question Re: Essential Thrombocytosis (high platelets)

Quote:
Originally Posted by dodieh
Hi everyone,just joined the site what a comfort to me reading your notes,Had a stroke 3yrs ago due to head abcesses am now p/sighted an have left sided w/ness.2yrs ago d/nsd with un/thyroid have recently had a venogram still awaiting results,also raised pc on last blood test. Am now waiting for app, to see heamo count was 680 very low to some of you,am feeling tired an achy a lot have been since the stroke My doc has just informed me [going thru my notes] that my pc was really very high 26yrs ago,nothing was done back then about it
anyone had this happen

 
Old 04-09-2005, 11:03 AM   #13
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Re: Essential Thrombocytosis (high platelets)

Hey-- I am 23 years old and have just found out that I have a platelet count of 1.6 million. As I'm reading through other postings, I have not come across anyone saying that their count was that high. Two months ago was the first time that it had been identified by a blood test but I have no idea how long I have had this problem. The first test showed that it was 1.3 million, and since then, it has gradually gone up to 1.6 million. I have been seeing a specialist who recommended another specialist to me that will talk about treatment or observation of the platelet count. My appt isnt for another 3 weeks and until then I am left hanging. The hematologist that I have been seeing recommended not treating me to bring my platelet count down but the more I read, the more I worry that not doing anything may not be such a good idea. But I'm only 23!!!

Has anyone ever heard of a platelet count this high or at this age or what the treatment is for such a high count?

 
Old 04-21-2005, 01:54 PM   #14
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Re: Essential Thrombocytosis (high platelets)

It looks like we have a very similar situation. My counts are between 1.2 million and 1.6 million. I was taking baby aspirin every 3 days but I was getting severe bruises so my doctor took me off the aspirin. I am just monitoring for now but she will medicate me if it goes above 1.7 or 1.8 million. I certainly know how you feel! It is very difficult when you know your at risk, but the medication also can put you at risk for developing leukemia. Hang in there! Just keep monitoring & you will be fine.

 
Old 06-11-2005, 10:10 PM   #15
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Re: Essential Thrombocytosis (high platelets)

Hi everyone,

I too, was diagnosed with Essential Thrombocythemia with platelets at a million. I take 1500 mgs of Hydroxyurea a day with a 81 mg aspirin. Recent research has shown there is a genetic mutation of the gene JAK2 which permanently activates an enzyme - a tyrosine kinase - involved in the proliferation of blood cells. (Like the "on" switch gets left on)

Our bone marrow is overproducing (proliferating) blood cells.

There is information on the web, just do a Google search on Myeloproliferative disorders.

Hang in there!

Sue

 
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