Anyone near Dorking in Surrey who’d like to meet up?

[Gipsy123]

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

[Mookat4]

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

[Gipsy123 in reply to Mookat4]

hi Kate,

I’m away for the first couple of weeks in January -: would meeting on Sunday 14th Jan at Denbies -10.30 am for coffee - work for you. ?

[Mookat4 in reply to Gipsy123]

Yes, sounds good to me. See you on the 14th.

[Gipsy123 in reply to Mookat4]

👍

[Bobadog in reply to Mookat4]

Hi there,

I’m near Guildford and would be very happy to meet up too.

PV (2014): venesections for 7years = Iron deficiency +

Then Peg injections for 16months (45mg fortnightly but caused paraesthesia ++)

Stopped Peg.

Now Taking Rux 10mg twice daily…works a treat so far.🤗

Haematocrit dropped + .47 to .39 in 3 weeks!

All the very best

Bobbie