New mpn : Hi diagnosed with ET 3 years ago age 2... - MPN Voice

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Samlowery17
Samlowery17

Hi diagnosed with ET 3 years ago age 28 been stable since now 31 and platelets high at 1560 started interferon last week last check platelets dropped to 1200!! Just wondering if anyone else on this and how it makes them feel am ok apart from I just feel quite disconnected from things, and sleepless nights also is anyone as young as me I have been so worried as I have 2 young children. My consultant explains that I will be here for a long time and live a normal lifespan all be it no major thrombosis thanks it would be nice to hear from people going through same situation

4 Replies

Hi I was first diagnosed with ET twenty years ago and so far I've been on aspirin only with no problems. Haematologist has said I'll need to go on interferon in a few months time as my platelet count is creeping up. It is a long term condition and I've been told several times about a normal life span. There's lots of great information on this site. I think general advice is to eat healthily, exercise etc and I try to do all that. I'd be interested to know how you get on with interferon as time goes on. Good luck!

Hi, fellow young parent! I was diagnosed with PV at 31 after my first OB appointment’s bloods came back. Now I have a nine month old. Totally get the fear about having an MPN plus wee humans.

On the bright side, Pegasys seems to be starting off strong for you. It did for me too! Normal bloods inside two months. And really, with the advances made in the last decade, ropeginterferon finishing its trials, and the quality and specificity of testing and genetic research now, my doctor is quite convinced we youngsters will be around for major breakthroughs.

Pegasys can have psychological side effects. I would suggest you talk it out with your partner, your physician, and a mental health professional as needed. We have perfectly good reasons to be anxious, but if it’s affecting your day to day, it’s important to share.

Best of luck. :3

Hi Sam My daughter is now 17 she was diagnosed with ET and calr and Von Willebrand when she was 13. She was put on Hydrea for 2 years. Her platelets were over 2000. Her platelets is now 1368 We put her on peg inteferon a month ago she is on 90 at the moment but is getting massive headaches and even sleepless nights, they say the side effects will become better and after a month her platelets only dropped with a 100, but i hope every month it will drop, what is your platelet count at the moment and on how much interferon.

regards

Pieter

Hi am on 90 at the moment every week last time I was checked was when I wrote this going next week so will hopefully know then. Yeah I had headaches and weird feelings also woke a lot through night in the first few weeks but now I don’t get any the only thing I get is tingly hands

Regards sam

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