Essential Thrombocytosis

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RE: ET - hydroxyurea

by aussiechick on Sat Apr 27, 2013 09:33 AM

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hi

 

I have been taking 500 per day of hydra for the last 5 years  before that it was 1000mg .  I am also on blood pressure tablets but have not had any problems with them.  I can not take any less Hydra because my counts go up too high.    i also have problems with my tummy   had to stay in hospital for 1 week  because I could not keep anything down   but that has now settled down and have started putting on weight again. 

Just take one day at a time, and try to eat has healthy as i can    

take care   Carmen

RE: Essential Thrombocytosis

by hometypist on Mon Apr 29, 2013 08:36 AM

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I did a CBC check on 18th April, 2013 when i had a burning sensation on my right thumb, middle and index finger, it was like when pain is there on thumb finger tips, there was no pain gon index finger tips, sometimes both middle and thumb finger tips burning sensation but it used to go away after 1 to 2 minutes, it was then i thought to do a test and found that my platelets has increased by 50000, also on a fall i fractured my left leg ankle, was wonder whether during fracture platelets goes up or not.  Currently still on ayurveda medicine.

Does anyone know whether mangoes,  jambolan and fig will increase platelets in human body.

 

QUOTE Hi All, Further to my message as below, I would like to inform all that on 17th March, 2013, I went for a random CBC check and found that my platelets are at 1007000 so a small consolation that it has reduced by atleast 21000. Also, other paramaters are normal. Though not much of a reduction in platelets, but keeping my fingers crossed and trying to follow the dietary restrictions of my Ayurveda doctor. Also, would like to know whether during the increase of platelets over a period of time, is it normal to have normal platelets of 250000 suddenly. My platelets was going on increasing since 2002 till 2006 Jan, ranging between 525000 to 650000 i think and then suddenly in Feb/Mar 2006, it showed normal of 250000, just want to know is this normal in Essential Thrombocythemia. Regards, UNQUOTE

RE: Essential Thrombocytosis

by hometypist on Mon Apr 29, 2013 08:43 AM

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I was wondering, my platelets increase during these past 3 months was not much has been in the range of 1001000 to 1051000, i.e. without medication, can anyone let me know theirs without taking medication.

I also understand that Quinine which is used for malarial treatment reduces platelet count, but not adviseable since only doctors can prescribe and there are lots of side effects, does anyone know about this.

RE: ET - hydroxyurea

by daizyjune on Tue Apr 30, 2013 09:35 PM

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Questions  on those with dizziness:

I now have it too! talked with my doctor today and  he said: 

1. Dizziness usually occurs with people whose numbers are  over a million and  mine was in the 400,000 last bloodwork

2. Since I've been taking  hydroyurea for 3 years now, it would have shown up sooner

3. It's too rare to happen usually

I disagree with him  on all points so my question to you all is how long have you been taking the drug and what do your numbers usually run?

thanks in advance for replies,

Daizy

RE: ET - hydroxyurea

by aussiechick on Wed May 01, 2013 12:39 AM

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Hi Daisy

I have been on Hydra for 7 years   but have been dizzy  for even longer   my count is  about 500  

My doctor also says he does not think it has anything to do with the ET   but   it is a coinsidence that a lot of us with ET also have the dizzyness.    Again I think that they just do not know   and it is up to us to look after our conditions    We have to get as much info we  can  and look after ourselves .   That is why i   love this site and another one I am on in Australia    I have learned a lot from them both

take care  Carmen

RE: ET - hydroxyurea

by daizyjune on Wed May 01, 2013 12:58 AM

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On May 01, 2013 12:39 AM aussiechick wrote:

Hi Daisy

I have been on Hydra for 7 years   but have been dizzy  for even longer   my count is  about 500  

My doctor also says he does not think it has anything to do with the ET   but   it is a coinsidence that a lot of us with ET also have the dizzyness.    Again I think that they just do not know   and it is up to us to look after our conditions    We have to get as much info we  can  and look after ourselves .   That is why i   love this site and another one I am on in Australia    I have learned a lot from them both

take care  Carmen

Carmen,

thank you for your response! I agree that it is great to have this forum..our doctors do not have this disease so they do not know what we go thru, they only have their textbooks..I am looking for information and ammunition to go back to my doctor with facts from around the world..I am in America, United States, the state of Pennsylvania.

D.

RE: Essential Thrombocytosis

by hometypist on Fri May 10, 2013 04:58 PM

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Hi, I am wondering why nobody is replying to my messages. In any case, I wish all of you the best in your endevour to find a solution to Essential Thrombycytosis.

RE: Essential Thrombocytosis

by CindyN on Fri May 10, 2013 05:13 PM

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i'm sorry you feel no one was answering. My daughter didn't get on the Hydrea until her platelets hit 2,500,000. She has been on the medicine ever since, almost 3 years now and she is 17. He platelets on the Hydrea stay at 1,300,000. I like reading when people write about there symptoms and side effects from the Hydrea so I know what my daughter is going through. She doesn't like to complain or tell me to much because she doesn't want to go back to dr or not be able to go out as much.

I heard Quinine has side effects that make it not worth using for this. That is all I have heard on that.

Keep posting...

RE: Essential Thrombocytosis

by emptyk on Fri May 10, 2013 05:29 PM

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On Apr 29, 2013 8:43 AM hometypist wrote:

I was wondering, my platelets increase during these past 3 months was not much has been in the range of 1001000 to 1051000, i.e. without medication, can anyone let me know theirs without taking medication.

I also understand that Quinine which is used for malarial treatment reduces platelet count, but not adviseable since only doctors can prescribe and there are lots of side effects, does anyone know about this.

I have been thinking about getting off the medication I am on. I have not been abble to get my numbers under 600,000 for about 18 monthes and has been as high as 750,000. Suddenly 2 monthes ago it dropped to 425,000 and when i went in for my knee surgery 8 weeks ago for my prelininary blood workup it dropped to 365,000. I have gone to the hemo doctor since the surgery and he still wants me to stay on the same regime of Hydrox. I'm not sure now what caused the sudden change but I would like to know if my numbers would be that dangerous if I dropped off the meds. Sorry, this doesn't help you with your question BUT if I do drop the meds I will post my results.

RE: Essential Thrombocytosis

by emptyk on Fri May 10, 2013 05:33 PM

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On May 10, 2013 5:13 PM CindyN wrote:

i'm sorry you feel no one was answering. My daughter didn't get on the Hydrea until her platelets hit 2,500,000. She has been on the medicine ever since, almost 3 years now and she is 17. He platelets on the Hydrea stay at 1,300,000. I like reading when people write about there symptoms and side effects from the Hydrea so I know what my daughter is going through. She doesn't like to complain or tell me to much because she doesn't want to go back to dr or not be able to go out as much.

I heard Quinine has side effects that make it not worth using for this. That is all I have heard on that.

Keep posting...

When I first started taking Hydrea I would occasionally get mouth sores but I haven't had any in the last three years (I've been on Hydroxerea for 7 years). I have seen my numbers come down recently to the normal range just taking the same dosage I've been taking for a year.

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