Hi. I’ve had a diagnosis of PMF for over seven years now, and it looks as tho I’ll need to be based near Dorking, in Surrey ( my family home) for the foreseeable future. I’ll have a toehold in Edinburgh , too (long story). I’m being treated at the Royal Marsden Hospital in Sutton (another long story). Condition pretty stable. Main symptoms are fatigue , brain fog, and bone pain. I’m taking 15 mg ruxolitinib twice a day, and since weekly injections of EPO were added, my haemoglobin levels have pretty well normalised. Definitely feel more energetic.
I really enjoyed meeting other people with MPNs at the Edinburgh forum recently. If there are any other people with MPNs within reach of Dorking who’d like to meet up occasionally for a social chat , do make contact.
All the best
Rachel
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Gipsy123
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hi I am based near Dorking Surrey and would love to meet another person living with an MPN. I have JAK2+ MPN-U. Happy to make an arrangement for some time in the new year. Kate
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