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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)
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@chocolategirl

I was diagnosed with ET back in January and started on HU in February. My doctor has me on 1000 mg everyday and my platelets are quite low now. I've had no side effects from the med that I can tell.

I do, however, have throbbing joints and shooting pains quite often, I notice them most when at rest. Has anyone else experienced this? If so - any solutions other than OTC pain relievers?

Thanks.

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Replies to "I was diagnosed with ET back in January and started on HU in February. My doctor..."
eileen11108 | @eileen11108 | Oct 13 7:13am

I have been on low dose HU since 2022 for ET JAK2. I am currently taking 500 mg four days a week. I have lately been noticing leg aches but not shooting pains, I feel the best when I take 500 mg three days a week. The extra pill was requested by my hematologist to get my platelets to 400 (were about 520).
Best wishes, Eileen

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mdterp76 | @mdterp76 | Oct 13 10:10am

I started gradually with HU, 500 mg, 1x week for a month, then increased over 6 months to 4x week. The adjustment has gone well. I also need daily iron for low iron but not anemic and daily baby aspirin. Could a lower dose of HU benefit you w/o side effects. Claritin is supposed to help with pain. Also, are you hydrating have your body weight? I find hydration is so important to my health and ET journey. Consult with your doctor first about Claritin and other changes to your plan. Also, are you seeing a hematologist/oncologist vs just your internist? They know more about MPN's over regular doctors. Wishing you brighter days in the future!
Karla

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blondie65 | @blondie65 | Oct 13 12:53pm

I also started on 1,000 mg per day in February of this year. I have really bad aches and pains. My legs are the worst. It is also worse at night. I haven’t said anything to my Oncologist but I will at my next appointment.

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