Hello everybody,

I was diagnosed with ET in 2003, platelet count 650, JAK2 not then discovered.After 18 years only on aspirin and platelets stable at 650, the count started to go up and on reaching 1350 I was put on Roferon-a. The count, after 9 months of treatment was 250-300. I am still, a year later, on the Roferon-a. The side effects are mainly constant pain from mid-spine down, relieved for sleeping by paracetamol and a half to one hour walk each day. My eyes also sometimes suffer from a shimmering aura but I rarely get a headache. At 73 years old and 53 kg I would like to reduce my dose from 2 injections a week x 3,000,000 IU. I can't find any info on a regime for dosing patients whose platelet count is now normal. My haemo is not easily accessible. Does anyone know how to find out and also if it is preferable to know if you are JAK2 + or - ? Thanks for any info.

2 Replies

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  • I am not on interferon so cannot give you any personal experience but it would seem that if your platelets are now stable then you might be on the correct dose for you. I am a great believer in asking questions of the person who is treating you if you are worried. There should be a phone number on one of your appointment letters - phone and make an appointment. If you can't get answers from the haematologist who is caring for you then ask for another opinion. Jak2 status is done with a simple blood test and I think as far as the patient and treatment is concerned it is not all that relevant. The relevance appears to be in research. There was a flurry of research as soon as they found the Jak2 mutation but the resulting Jak inhibitor drugs appear to work whether you are Jak +ve or -ve. Go figure!

  • Good advice beetle but my haem travels a lot and I live in a small rural area. My platelets were stable on 3 injections a week so dose was reduced to 2 and they have remained stable for 9 months. I would like to reduce to 1 every 5 days and possible 1 per week later on but my haem says I must stay on 2 for 2 years.He is away now so I was hoping to find a dosing regimen somewhere but no luck. It all seems so arbitrary. I think everyone is on different doses and a fair amount of guesswork takes place----also not so many people are on interferon so not as much info out there that is very recent and general. Hope you are doing ok and getting good advice and treatment.

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