Hello, I am 43 and was diagnosed with ET and positive JAK.My level of platelets count is around 500.I discovered it after a splenic vein thrombosis in June.After that I follow treatment with Eliquis 5mg twice a day.All this time my liver enzymes are high ,and they are not dropping. ALP is 120 and GGT is 320.I have tried postponing to take hydroxy and just wait but nothing has happened.It seems that I still have some microthrombosis to the liver and I should start another treatment. Now I have started with Hydroxy for 1 month to decrease my platelet count and stop overloading my liver.I started with 500mg but no platelet count decrease happened,then I increased it to 1000mg,also nothing happened and now my doctor advised to increase to 1500mg and if no result again to 2000mg which makes me nervous and stressed,I am not happy to take this medicine.What is the time that you know from your experience Hydroxy shows results? If the dose is ok the platelet count should decrease immediately? In general I am healthy,I go for running - i am a marathon runner and I was always took care of my diet.Any experience with liver enzymes and ET?Any advise?
Thanks
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Nick43nick
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Hydroxyurea does take a while to be effective. The way it works is to inhibit DNA activity in your body, including in your hemopoietic stem cells. Reducing thrombocytosis not something that happens immediately. Your platelet count is not very high, however. You are barely out of range (max = 450). This may have more to do with how your platelets are behaving than the absolute number of platelets. The Eliquis should help protect you from thrombosis going forward.
Regarding your liver function, there is no way to be able to tell exactly what is going on. It can be difficult to tell what is going on in a situation like this. It sounds like you may have existing damage to your liver that likely plays a significant role. Do be aware that hepatotoxicity and elevated liver enzymes are known side effects of hydroxyurea. The higher the dose, the more likely adverse effects are to occur.
There are other treatment options if the hydroxyurea seems to be not working and/or having an adverse effect on your liver function (e.g. PEGylated interferon, ruxolitinib). It is best to review your options with a MPN Specialist. Many doctors, even hematologists, do not have the KSAs to provide optimal treatment. If you have not already consulted with a MPN expert doc, it would be advisable to do so. Here is a link to some docs with the needed expertise mpnforum.com/list-hem./ .
Please know that we cannot tell you what is going on and what you should do next. Your situation is complex and needs expert input to sort out what is going on. Also know that ALL of the medications used to treat ET have their own list of side effects. It sounds like you have an awareness about what is going on in your body that will serve you well. Please pay attention to your own instincts and assert your own preferences once you have looked into all of your treatment options.
Hope that helps. Do let us know how things turn out.
Thank you for the reply.I forgot to mention that I have also splenomegaly (spleen size is close to 16-17cm) and liver size is on the on the highest limit of normal.Do you know if spleen size will decrease with Hydroxyurea?
Effective tx for MPNs will often include decreased splenomegaly. I would not want to venture a guess about your specific situation with your hx of splenic vein thrombosis. I also had mild splenomegaly which did get better with tx for PV. You are asking very good and cogent questions. Suggest again a consult with a MPN Specialist if you do not already have one.
FYI - The way I handle this is that I see a MPN Specialist at Johns Hopkins MPN Clinic which is about 2 hours away. I have a local hematologist who handles my ongoing care who is a great doc, but not a MPN expert by his own definition. The MPN Specialist consults with me and my on-going hematologist about my care. This arrangement has worked really well for me.
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