Essential Thrombocytosis

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Essential Thrombocytosis

by Larsie on Fri Oct 26, 2007 12:00 AM

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I was so happy to receive a reply from my earlier message. Most of the messages that I've read here deal with the platelet numbers, but very little on the symptoms that are attached to E.T. I felt great two months ago when my elevated platelet numbers were spotted at my annual physical. I can't believe how fast my health went down from there! I have had aching ribs, but especially I have had pain in my fingers, toes, and back of my legs. Along this stage I was simply taking the baby aspirin. My pain became so strong--weakness and dizziness in just walking down a hallway--that I'm now on hydrea. It's been six days since I've started on this drug. I do begin to see some improvements in my pain. My doctor has said I can take Tylenol when needed for the pain. My platelets elevated quickly--about 100,000 every week, leading to that "million mark". Most interesting to me personally is that my sister was diagnosed with myeloma about the same time that I was diagnosed with E.T. So many similarities (bone marrow biopsy, ...) Thank you for all responses.

RE: Essential Thrombocytosis

by Ildegonda on Wed Oct 31, 2007 12:00 AM

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Hi,i'm ildi from hungary.

I was diagnostized with et. 1.5 year ago.I have jak 2 mutation.

I'm was on hidrea but from august i'm on interferon,because we are planning to have a baby.

Interferon has got terrible side-effects:(

Is there any researches about et. in your country???

 

 

by 

ildi

RE: Essential Thrombocytosis

by CeCee on Thu Nov 22, 2007 12:00 AM

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On 10/26/2007 Larsie wrote:

I was so happy to receive a reply from my earlier message. Most of the messages that I've read here deal with the platelet numbers, but very little on the symptoms that are attached to E.T. I felt great two months ago when my elevated platelet numbers were spotted at my annual physical. I can't believe how fast my health went down from there! I have had aching ribs, but especially I have had pain in my fingers, toes, and back of my legs. Along this stage I was simply taking the baby aspirin. My pain became so strong--weakness and dizziness in just walking down a hallway--that I'm now on hydrea. It's been six days since I've started on this drug. I do begin to see some improvements in my pain. My doctor has said I can take Tylenol when needed for the pain. My platelets elevated quickly--about 100,000 every week, leading to that "million mark". Most interesting to me personally is that my sister was diagnosed with myeloma about the same time that I was diagnosed with E.T. So many similarities (bone marrow biopsy, ...) Thank you for all responses.

I too was diagnosed after a routine physical. I had been feeling achy (soreness in joints - particularly fingers and elbows) and decided to get a check-up. The doctor called me two days later and referred me to a hem/onc. My platelets were 1.8 mill. He put me on hydrea (2 tabs daily). After 1 week, they increased by 100,000. I am now on 3 capsules per day. I take them in the early eve. so I don't really notice any side effects. This is all so new and scary....I have been doing some research and would love to share information...

RE: Essential Thrombocytosis

by sunshine47 on Thu Feb 14, 2008 12:00 AM

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I am in the United States and I have been research different drugs and their side effects and Interferon Alpha has not effects on the fetus so what you are doing is the best.  Best of luck.

RE: Essential Thrombocytosis

by sallyann on Mon Aug 18, 2008 12:00 AM

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On 11/22/2007 CeCee wrote:

 

On 10/26/2007 Larsie wrote:

I was so happy to receive a reply from my earlier message. Most of the messages that I've read here deal with the platelet numbers, but very little on the symptoms that are attached to E.T. I felt great two months ago when my elevated platelet numbers were spotted at my annual physical. I can't believe how fast my health went down from there! I have had aching ribs, but especially I have had pain in my fingers, toes, and back of my legs. Along this stage I was simply taking the baby aspirin. My pain became so strong--weakness and dizziness in just walking down a hallway--that I'm now on hydrea. It's been six days since I've started on this drug. I do begin to see some improvements in my pain. My doctor has said I can take Tylenol when needed for the pain. My platelets elevated quickly--about 100,000 every week, leading to that "million mark". Most interesting to me personally is that my sister was diagnosed with myeloma about the same time that I was diagnosed with E.T. So many similarities (bone marrow biopsy, ...) Thank you for all responses.

I too was diagnosed after a routine physical. I had been feeling achy (soreness in joints - particularly fingers and elbows) and decided to get a check-up. The doctor called me two days later and referred me to a hem/onc. My platelets were 1.8 mill. He put me on hydrea (2 tabs daily). After 1 week, they increased by 100,000. I am now on 3 capsules per day. I take them in the early eve. so I don't really notice any side effects. This is all so new and scary....I have been doing some research and would love to share information...


 

RE: Essential Thrombocytosis/ sore joints

by sallyann on Mon Aug 18, 2008 12:00 AM

Quote | Reply

 

On 11/22/2007 CeCee wrote:

 

On 10/26/2007 Larsie wrote:

I was so happy to receive a reply from my earlier message. Most of the messages that I've read here deal with the platelet numbers, but very little on the symptoms that are attached to E.T. I felt great two months ago when my elevated platelet numbers were spotted at my annual physical. I can't believe how fast my health went down from there! I have had aching ribs, but especially I have had pain in my fingers, toes, and back of my legs. Along this stage I was simply taking the baby aspirin. My pain became so strong--weakness and dizziness in just walking down a hallway--that I'm now on hydrea. It's been six days since I've started on this drug. I do begin to see some improvements in my pain. My doctor has said I can take Tylenol when needed for the pain. My platelets elevated quickly--about 100,000 every week, leading to that "million mark". Most interesting to me personally is that my sister was diagnosed with myeloma about the same time that I was diagnosed with E.T. So many similarities (bone marrow biopsy, ...) Thank you for all responses.

I too was diagnosed after a routine physical. I had been feeling achy (soreness in joints - particularly fingers and elbows) and decided to get a check-up. The doctor called me two days later and referred me to a hem/onc. My platelets were 1.8 mill. He put me on hydrea (2 tabs daily). After 1 week, they increased by 100,000. I am now on 3 capsules per day. I take them in the early eve. so I don't really notice any side effects. This is all so new and scary....I have been doing some research and would love to share information...


 

sore joints, i would love info regarding your info,

same as everyone else here with E.T, ......1.1 mil, coming down nicely on hydrea, im just really wanting to manage the joint pain,bones in foot,knee,wrist,elbow,shoulder on left side, they all take turns yelling the loudest, and some days its only the elbow,

is anyone else finding the joint pain really really annoying?

has anyone come up with a way to sooth the pain?

thanks so much to everyone for contributing to this site, i appreciate your varied experiences and knowlegde,

hugs to all,sally.

RE: Essential Thrombocytosis

by sallyann on Fri Sep 12, 2008 12:00 AM

Quote | Reply

 

On 11/22/2007 CeCee wrote:

 

On 10/26/2007 Larsie wrote:

I was so happy to receive a reply from my earlier message. Most of the messages that I've read here deal with the platelet numbers, but very little on the symptoms that are attached to E.T. I felt great two months ago when my elevated platelet numbers were spotted at my annual physical. I can't believe how fast my health went down from there! I have had aching ribs, but especially I have had pain in my fingers, toes, and back of my legs. Along this stage I was simply taking the baby aspirin. My pain became so strong--weakness and dizziness in just walking down a hallway--that I'm now on hydrea. It's been six days since I've started on this drug. I do begin to see some improvements in my pain. My doctor has said I can take Tylenol when needed for the pain. My platelets elevated quickly--about 100,000 every week, leading to that "million mark". Most interesting to me personally is that my sister was diagnosed with myeloma about the same time that I was diagnosed with E.T. So many similarities (bone marrow biopsy, ...) Thank you for all responses.

I too was diagnosed after a routine physical. I had been feeling achy (soreness in joints - particularly fingers and elbows) and decided to get a check-up. The doctor called me two days later and referred me to a hem/onc. My platelets were 1.8 mill. He put me on hydrea (2 tabs daily). After 1 week, they increased by 100,000. I am now on 3 capsules per day. I take them in the early eve. so I don't really notice any side effects. This is all so new and scary....I have been doing some research and would love to share information...


 

hello, thanks for sharing your situation, i would be very intwerested in

hearing your findings, i find the info generally available limited and often

repedative, im really wanting to manage my symptoms and be informed as they either develop or change,

sore joints are settling with time, been on 500 mg of hydrea for 3 months with defiate progress,

i have read that the pain in joints and fingers/feet etc are due to the movement of tiny clots in the thicker blood thru the smaller blood vessels,

i am keen to  hear anyopnes findings on understanding E.T  and living on hydrea, thanks again , sally.

RE: Essential Thrombocytosis/ sore joints

by Silkstocken on Tue Feb 16, 2016 06:04 PM

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Omg!! I found this site. Misdiagnosed for years as fibrom6algia it turns out I wasn't crazy telling the doctors it wasn't that anD to dig deeper into their over extended egos.  Years...years of progressive pain in all joints,raynaulds , burning, fatigue and almost dying after surgery and put into a comma for 5 days and  after bleeding out and 9 transfusions I walked away alive but with et and jak2. Tylenol and Ultram lost the ability to help. Still take it but if anyone has anything to add to help reduce this 24hr pain I will owe you my heart..figure of speech. .don't want to end up in court. Ps my onc said I shouldn't have pain and he isn't sure why..help! Am I crazy or is it more advanced or something else?

Sue

RE: Essential Thrombocytosis/ sore joints

by Bevsheffield on Fri Oct 13, 2017 01:25 AM

Quote | Reply

On Aug 18, 2008 12:00 AM sallyann wrote:

 

On 11/22/2007 CeCee wrote:

 

On 10/26/2007 Larsie wrote:

I was so happy to receive a reply from my earlier message. Most of the messages that I've read here deal with the platelet numbers, but very little on the symptoms that are attached to E.T. I felt great two months ago when my elevated platelet numbers were spotted at my annual physical. I can't believe how fast my health went down from there! I have had aching ribs, but especially I have had pain in my fingers, toes, and back of my legs. Along this stage I was simply taking the baby aspirin. My pain became so strong--weakness and dizziness in just walking down a hallway--that I'm now on hydrea. It's been six days since I've started on this drug. I do begin to see some improvements in my pain. My doctor has said I can take Tylenol when needed for the pain. My platelets elevated quickly--about 100,000 every week, leading to that "million mark". Most interesting to me personally is that my sister was diagnosed with myeloma about the same time that I was diagnosed with E.T. So many similarities (bone marrow biopsy, ...) Thank you for all responses.

I too was diagnosed after a routine physical. I had been feeling achy (soreness in joints - particularly fingers and elbows) and decided to get a check-up. The doctor called me two days later and referred me to a hem/onc. My platelets were 1.8 mill. He put me on hydrea (2 tabs daily). After 1 week, they increased by 100,000. I am now on 3 capsules per day. I take them in the early eve. so I don't really notice any side effects. This is all so new and scary....I have been doing some research and would love to share information...


 

sore joints, i would love info regarding your info,

same as everyone else here with E.T, ......1.1 mil, coming down nicely on hydrea, im just really wanting to manage the joint pain,bones in foot,knee,wrist,elbow,shoulder on left side, they all take turns yelling the loudest, and some days its only the elbow,

is anyone else finding the joint pain really really annoying?

has anyone come up with a way to sooth the pain?

thanks so much to everyone for contributing to this site, i appreciate your varied experiences and knowlegde,

hugs to all,sally.

Hi sally I too was diagnosed with et jak2 Had it for nearly five years before actually tested Earlier this year Have my regular 3 monthly blood tests etc Back in February had a hip replacement And bled out twice internally and had 5 blood transfusions In icu Around march started getting pain in upper back Drives me crazy Then aches and pains In different places like pain in back of calves The last week I have had it everywhere finger joints Hand joints Arms shoulders Feet toes I find the only bit of relief I get is with a hot water bottle I tend to get very cold Then can be really hot I also find that walking or playing table tennis seems to Take my mind off it. Don't sleep long periods either Any one have any better suggestions to help?
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