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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 1 hour ago | Replies (591)Comment receiving replies
My daughter is 24 diagnosed last July with ETJak2. She has a number of symptoms the worst are joint hip pain, extreme fatigue and nausea ( she can’t eat anything). She started on pegasys and it was too hard on her body so she was moved to Besremi. We learned she is the second patient ever to be allergic to the drug and she can’t take it. So back to Pegasus which keeps her in bed for three days and unwell the rest of the week and then it is a rinse and repeat cycle. This is not sustainable. They will reduce her pegasys down to 22,5 I don’t have hopes that it will give her a much better life. She has been to Castro, endocrine and a physiatrist with little results. We need help and we are desperate
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@dmcj Oh damn I am so so sorry! You and your daughter have to keep fighting for relief. Have you tried the MPN forum on Reddit? Theres a couple of people on there that have done extensive research on this subject. Saying prayers!
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@dmcj
So sorry to hear about your daughter. You may have addressed this in a previous post but have they tried hydrea? Also, I am wondering, Why does she have to be on a platelet lowering medication? Many times if the platelets are under 1,500,000 and the patient has not had a blood clot and the patient is under 60 yo they just treat with aspirin. I am not a physician but I have had ET since 2002 so I have seen the many different protocols and medications used over a long period of time. I am in no way telling her not to take platelet lowering meds, I am just wondering. I got several consults from specialists in MPDs over the years - they never stated me on platelet lowering meds until I was 60yo and platelets over 1,500,000. But maybe the protocol has changed.