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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (768)Comment receiving replies
@przybillan I think most people delay HU if they can because it can lose effectiveness over time and there can be side effects with long term use. I went on it as soon as I was diagnosed. I was 65, my platelets were increasing more rapidly and I had some symptoms. The HU has controlled my platelets and reduced the more troublesome symptoms. The baby asprin helped with symptoms too.
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@eloise999 I’m 73 with ET (no JAK2) and have been on HU for more than 30 years. I had been on 500 mgs/day for years but approximately 2 years ago my H/O added an additional capsule 3 days per week (I take both in am). I’ve never experienced side effects that I can attribute to HU - more likely just changes due to aging (cholesterol, GERD). Within a year or 2 of being diagnosed with ET, my H/O did find I don’t absorb B12 so I give myself a monthly injection but, at least at the time, neither doc felt that the B12 and my ET were related altho my PCP did say “another condition that older people get!” Like everyone else here, I don’t know what to expect going forward but I’ve always had an upbeat attitude toward life so hopefully that continues. In any case, discovering this site and sharing experiences and concerns with others has been reassuring: no one is alone.
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@eloise999
Hi, thanks for sharing. I am curious about the symptoms, is it fatigue? sleep?