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Starting 17th year with ET. What's ahead?

Blood Cancers & Disorders | Last Active: Jan 19 4:08pm | Replies (52)

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@loribmt

The HU should help to bring down the high platelet level to a more normal level. Your hematologist will moniter your blood work carefully to see if it’s working for you. The reason I asked about infections is that can sometimes cause a temporary elevation of platelets. When you mentioned your numbers were found on a routine blood test, my concern is that your primary care physican was prescribing the HU. Having a hematologist on board is important. ☺️

We have quite a few members who take HU and have for years. Most people seem to tolerate it very well with many side effects. Here’s a link to a current discussion with other ET members and their experiences. https://connect.mayoclinic.org/discussion/jac2mutation/?commentsorder=newest&pg=1#chv4-comment-stream-header

It can be helpful to find the underlying cause of the elevation though. ET (essential thrombocythemia) is one of a group of blood disorders (myeloprolific neoplasms) that can be caused by an acquired mutation to a gene which controls production of blood cells, such as JAK2. Did you have any genetic testing done?

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Replies to "The HU should help to bring down the high platelet level to a more normal level...."

Hi Lori,
Yes, I had JAK test and negative. I think they ordered more tests that are not back yet as take more time. I do have an enlarged proximal phanangeal right ring finger joint and sternoclavical joint with no pain but deformed bone but never really determined cause but I have not had injuries or falls to cause them. I did have hand MRI saying to rule out inflammation/infection which was never done. I have negative rheumatoid factor from lab and no psoriasis. I might be able to get a new hand MRI to compare but Hydrea and aspirin is recommended for life now. Hand specialist I saw for first issue in 2023 was pretty useless and did know what I have from the MRI and wanted to do exploratory surgery which I declined. Difficult to get second opinion and rheumatologist did not know what it is either. Mostly frustrated appointments with docs I must say.