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Also did Jakafi help? Side effects? Wondering if 5 mg of Jakafi will even do anything?

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Replies to "Also did Jakafi help? Side effects? Wondering if 5 mg of Jakafi will even do anything?"

Hi, @colran, Essential Thrombocythemia is a condition where your body is producing too many platelets. It’s one of several blood conditions in a blood cancer category called Myeloproliferative neoplasms or MPN’s. With these MPNs there has been a change to the bone marrow, generally through an acquired mutation, which interferes with normal production of blood cells. Basically the ‘off’ switch has been circumvented.

With the over production of platelets, there is an increased risk for blood clots, causing strokes, pulmonary emboli or DVTs. So your doctor had you taking aspirin which acted as an anticoagulant. Over time, for some people with ET, the disease can progress to requiring more treatment to actually help control the over production of cells, not just keeping them from sticking together. But to also lower the amount of platelets to a ‘normal’ level.

That is where medications such as Hydroxyurea, Jakafi and other drugs come into play. These meds can help control the over proliferation. You’re wondering if 5 mg of Jakafi will have an impact. Since you’re new to this drug, and to this point only taking aspirin, your doctor is likely starting you on a low dosage to begin. It’s a good place to begin. Your doctor will monitor your labs to check for results and can always increase the dosage if necessary. That lower dosage will also minimize the potential for side effects.

I also did a quick search. We have quite a few members with ET. Most are taking hydroxyurea but there are several making reference to Jakafi. Here are the results of the search. Feel free to pop into any conversation: https://connect.mayoclinic.org/search/

What are your labs looking like these days? Have they changed significantly since 2019?

@colran When I was originally diagnosed with ET in 2005 at the age of 50, I was placed on anagrelide for about 10 years until it was becoming no longer effective in keeping my platelets down and within the normal range. I was then prescribed Jakafi and it was very effective in managing my platelet level for about 10 years until my ET converted to Myelofibrosis. I was on 10 mg of Jakafi twice a day and never experienced any negative side effects. FWIW, I did have a successful allogeneic stem cell transplant in October 2024. Good luck with your treatment.